Lifelines for Health (vol 16) - Let's Talk About Feelings: What Are You Doing with Yours? by CHES

A CHES Publication

Fall/Winter 2020 I Volume 16

Letâ&#x20AC;&#x2122;s Talk About

FEELINGS What Are You Doing With Yours? Complimentary & Alternative Medicine ...Uses for Pain in Bleeding Disorders, pt.2 l Market Research: Do You Want to Participate? l Recognizing Your Own Resilience: And Then Building On It l A Road of Uncertainties: Twists & Turns of Bleeding Disorder Treatments l Making Space in Difficult Times

2021

Education Programs Virtual programming We will continue into the summer of 2021 with Thursday webinars concentrating on the needs of the bleeding disorder community.

Please be sure to sign up at: https://ches.education/contact or https://nspiration.foundation/contact-preferences to receive email notifications of upcoming events and information.

Comprehensive Health Education Services has

Proposed dates for LIVE 2021 programs are as follows:

been serving the needs of those with rare bleeding conditions since 2009.

Late August-September Camp Zeke - Lakewood, PA

As long time members of the bleeding disorder community, our mission is to inspire awareness and

November 12-15

October 2-4, 2021 If we have learned anything as individuals dealing with rare, chronic health conditions living through a pandemic, flexibility is key; but we all need something to look forward to!

self-reliance for patients with chronic health conditions, their families, and their communities. More details on our programs can be found on our website: www.ches.education

Challenges have a way of bringing new opportunities

and we are excited to announce that CHES is partnering with the Cold Agglutin Disease Foundation (CADF) for their virtual conference beginning January 19, 2021.

Cold A-what you ask? Cold Agglutinin is a rare blood disorder that causes hemolysis. Hemolysis is when healthy red blood cells are mistakenly destroyed by the body causing symptoms such as anemia, shortness of breath and bluish discoloration of the hands and feet. Cold temperatures can trigger symptoms, including air conditioning. Think you may know someone with CAD or want to know more about it? Check out the CADF website at https://coldagglutinindisease.org/. We are thrilled to partner with this amazing group of individuals to assist in their mission to provide education and support for those managing CAD.

FACTOR REPLACEMENT REFLECTS THE PROTECTION WITHIN

For people with hemophilia, Factor treatment temporarily replaces what’s missing.1,2 With a long track record of proven results, Factor treatment works with your body’s natural blood clotting process to form a proper clot.2-6 Brought to you by Takeda, dedicated to pursuing advancements in hemophilia for more than 70 years.7

Stay empowered by the possibilities. References: 1. Peyvandi F, Garagiola I, Young G. The past and future of haemophilia: diagnosis, treatments, and its complications. Lancet. 2016;388:187-197. 2. Canadian Hemophilia Society. Factor replacement therapy. http://www.hemophilia.ca/en/bleeding-disorders/hemophilia-a-and-b/the-treatment-of-hemophilia/ factor-replacement-therapy/. Accessed May 18, 2018. 3. Franchini M, Mannucci PM. The history of hemophilia. Semin Thromb Hemost. 2014;40:571-576. 4. Hvas AM, Sørensen HT, Norengaard L, Christiansen K, Ingerslev J, Sørensen B. Tranexamic acid combined with recombinant factor VIII increases clot resistance to accelerated fibrinolysis in severe hemophilia A. J Thromb Haemost. 2007;5:2408-2414. 5. Antovic A, Mikovic D, Elezovic I, Zabczyk M, Hutenby K, Antovic JP. Improvement of fibrin clot structure after factor VIII injection in haemophilia A patients treated on demand. Thromb Haemost. 2014;111(4):656-661. 6. Berg JM, Tymoczko JL, Stryer L. Many enzymes are activated by specific proteolytic cleavage. In: Biochemistry. 5th ed. New York, NY: WH Freeman; 2002. https://www.ncbi. nlm.nih.gov/books/NBK22589/. Accessed May 18, 2018. 7. Shire. Shire’s 70+ year commitment to the hemophilia community. https://www.shire.com/en/newsroom/2018/january/7sossj. Accessed June 6, 2018. Copyright © 2019 Takeda Pharmaceutical Company Limited. 300 Shire Way, Lexington, MA 02421. 1-800-828-2088. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. S46132 03/19

instagram.com/ CHES_Programs

LifeLines for HealthSM Disclaimers The views and opinions of our writers are not a reflection of Comprehensive Health Education ServicesTM, Inc. (CHES) or its sponsors. This newsletter is designed to provide a forum for community members to express their views from an open and honest platform. It is meant to provide a sharing of knowledge and experience to help one another. Nothing in this newsletter is meant to replace the advice of your HTC, medical professional team or insurance provider. You are always urged to seek the opinion of a healthcare professional for treatment and your specific insurance provider for information. We take your privacy very seriously. We would never disclose your personal health information without your express written consent. We would never sell nor make available our secure database to anyone. Articles and pictures may not be reproduced, published, and/or placed on websites without the express written permission of CHES. In every publication of LifeLines for HealthSM, we will provide links to other websites that are not owned or controlled by CHES or its sponsors. We cannot be responsible for privacy practices of other website owners, nor can we be responsible for the accuracy of the information provided.

Letter From the Editors Welcome to our Fall/Winter 2020 issue of LifeLines for Health! As you may know, we have broadened the focus of this publication to serve the needs of all within the bleeding disorders community. Since 2009, CHES’ has and continues to champion the needs of underserved populations within our community. LifeLines for Health has been a consistent resource at every event we offer, so it feels like a natural progression to distribute to all of you-our families! In March of 2020, as we went to print, we never thought it would feel like we would live two lifetimes in one year-what a year! Our hearts go out to the one-million plus worldwide who have lost their lives to COVID, their family members and those now managing a myriad of lingering effects as a result. There are no clear-cut answers. As individuals who have seen and/ or lived through the HIV/AIDS epidemic in the 80’s and 90’s, this feels very similar; and for some of you, maybe a bit triggering. For now, as we did then, we follow the science. Virtual programming is the norm in 2020; although it hardly feels normal. Like everyone else, we miss sitting in a room together, quick conversations in the hallway, HUGGING, and all of YOU! But, because we are resilient, we adapt and move forward. Inhibitor camp programs, After the Shock and Leverage went successfully virtual! We sang songs, did science experiments, had campfires, and explored how broken pottery, symbolic of ourselves, can become more beautiful when “glued” back together. The One Drop: Rare Bleeding Disorder Consortium welcomed those with Rare Factor Deficiencies and Rare Platelet Disorders for a fun Zoom opening, virtual scavenger hunt and three FABULOUS sessions with Dr. Diane Nugent from Children’s Hospital of Orange County, CA. As a result of the collaboration between CHES and her Hemophilia and Diagnostic Laboratory, over 300 blood samples have been sequenced to determine phenotypic information for families affected by FVII and Glanzmann’s Thrombasthenia! The Virtual National LadyBugs Women’s Summit kicked off on 10/15/2020 and we look forward to reporting more about it in the spring issue. We are focusing on all the feels in this edition of LifeLines for Health. How deep is your vocabulary when it comes to emotions? Does frustration or fear look like anger in your home? Do you have problems identifying exactly WHAT you are feeling; who doesn’t right now?! Need more resources on complementary methods to manage pain? How about finding your calm in this chaotic time? Ever wonder about marketing research and why your input is so valuable? Hopefully, we have some answers that will help! New product updates and recalls have added to the tumult this year. Virtual programming on Thursday evenings will continue into 2021 so be sure to check out our website www.ches.education, or www.nSpiration. foundation, like us on Facebook, follow us on Instagram to stay apprised of how we plan to keep you up to date and connected. If you have an idea, comment or suggestion, don’t hesitate to let us know at info@ches. education. We love to hear from you! In the meantime, follow the science, find the helpers, take time for your emotional well-being and we look forward to seeing you, as soon as we can. - Janet Brewer & Eric Lowe jbrewer@ches.education

elowe@ches.education

"Our emotions need to be as educated as our intellect. It is important to know how to feel, how to respond, and how to let life in so that it can touch you." -Jim Rohn

LIFELINES for HEALTH

Fall/Winter 2020

Integrity, Accuracy, Empathy...

FEATURE 6 I Let's Talk About Feelings: What Are You Doing with Yours? After decades of human progression our society has taught us that it's okay to talk about our emotions. But do we all know how to do that, especially in a time when a global pandemic has turned our lives upsidedown? Our go-to expert, Gary McClain says it all begins with "owning" our emotions. Easier said than done, but he has plenty of ideas to try.

CONTENTS COMMUNITY CHATTER

FAMILY MATTERS

4 I "Virtual" Family Camp: Reaching for Normalcy

28 I Recognize Your Own Resilience: And Then Build On It

Inhibitor Family Camp just wasn't the same this year. But CHES (and the nSpiration foundation) rivaled COVID-19's hampering effects on life by bringing camp to homes. Rea Watson, mother of two boys with hemophilia and inhibitors explains more as a first-time participant.

With a pandemic on our hands, and life beating us down, we all need a little more resilience right about now - don't we? Believe it or not, resilience is already in all of us. You can strengthen it by trying these exercises. No curls or palates necessary.

WHATâ&#x20AC;&#x2122;S NEW

BLOODLINES

18 I Complimentary & Alternative Medicine ...Uses in Pain for Bleeding Disorders - Part 2 of 4

34 I A Road of Uncertainties: Twists & Turns of Bleeding Disorder Treatments

In this year's Spring/Summer issue, pain specialist, Angela Lambing, MSN, ANP, GNP introduced complimentary and alternative medicine. Angela specifically presented eleven different mind-body therapies, such as yoga, Tai-Chi, and biofeedback. Part 2 focuses on manipulative and body-based practices like acupuncture, massages, and more.

22 I Market Research: Do You Want to Participate? Your opinion matters! The term Market Research doesn't refer solely to suits in an office analyzing data. It starts with you, the consumer. Companies want to know your opinions, habits, needs, wants, and more to help them make big decisions. And they're willing to pay for it. As an individual in the bleeding disorder space, chances are, you've participated in a few yourself. But there are some things to consider before making that plunge for your next easy payout.

The open road can be so unpredictable, just as treatments sometimes are - from the old and dependable to the new and exciting. We have some of the biggest surprises that could stop traffic.

38 I Determined to Keep Moving James and Pete are two individuals managing hemophilia A, each with a triumphant story in their own way. But similarly, both have achieved their goals through grit, support, and preparation.

MIND BODY CONNECTION 42 I Making Space in Difficult Times Meditation techniques and practices are more mainstream than ever before. But don't overlook the necessity of a good space to process, grieve and self-reflect. Sound like a big undertaking? It just might be more obtainable than you think.

CONTENTS

VirtuaL -Fam i l y Camp

by Hanukkah “Rea” Watson

Reaching for Normalcy

arch has always been a memorable month for me and my family. It was the month we welcomed our oldest son Benjamin into the world over fourteen years ago. A traumatic circumcision led us to our diagnosis that came just in the nick of time. Stuck on an island at an overseas military base with a scarce supply of factor eight was just enough to save his precious life from slipping away! As new hemophilia parents that were just grasping the reality of what it would truly mean to raise a newborn son with a bleeding disorder, we found hope in the arms of a welcoming hemophilia community as we returned to the United States. This crazy journey rocked us to our core with so many ups and downs. It was not long into Benjamin’s young life that he would end up developing an inhibitor to add to his severe hemophilia A diagnosis. We had the courageous honor of doing it all over again, when our second son, Brandon, was diagnosed with severe hemophilia at birth. The NICU team quickly tested his cord blood after a very scary C-section birth. Brandon developed an inhibitor as a toddler- just as his brother had. They both have witnessed countless days in and out of the hospital; joint injuries, line infections, ridiculous amounts of school

absences as well as over a dozen surgeries between the two of them. With the help of so many organizations, support groups, a loving family, supportive friends and an awesome medical team, they have both overcome so many trials. This year was going to be one that we truly cherished, with Benjamin wrapping up middle school and preparing to enter high school. Brandon was getting exciting about walking through the doors of his middle school for the first time. Their little brother was over the moon about meeting his kindergarten class. Little did we know that March of 2020 would bring a pandemic resulting in our kids’ return to home earlier than we expected. They were home for the last few months of those last school years before transitioning to middle and high school. Monumental steps! Home for all of the summer. What were we going to do? Well, in all honesty, I am not sure we were motivated to do anything but sit around with the exception of a few family bike rides as we realized that our summer vacation plans would eventually be cancelled… We ended up doing what felt impossible on most days and that was, try our best to create some sense of normalcy. I’m sure everyone’s’ “normal” looked different. Then, to our surprise (after waddling in self-pity, utter despair and BOREDOM), we got an email from nSpiration/ CHES’ After the Shock Inhibitor Family Camp. We had never attended because our calendar was normally so congested with vacation plans to see family out of state. We were always aware of the resources and programs, but unfortunately, were never able to clear our schedule… Yeah, that may need to change once this all passes over! We signed up for the Virtual Family Camp and CampFire Events, and I am so glad that we did! We were given a schedule of a variety of virtual programs for family activities! I somehow got my teenager to take part and actually talk about his feelings from breaking a cup and putting it back together with golden materials… it was so beautifully broken! I didn’t know a cup could speak, be so inspiring and meaningful without even saying a word!

Benjamin shares the beginning stages of his Kintsugi project on the teens' group call.

LIFELINES for HEALTH

Fall/Winter 2020

We were able to connect with other inhibitor families. Some days things were so crazy, I had to turn off my camera and just listen and on other days I was able to be even more engaged, but it was camp, nonetheless. We enjoyed the singing, laughing, creating and science experimenting and for the first time since COVID-19 hit our state, we had something that felt about as normal as things have been. We even discovered how creative you can be with bleach when the whole entire United States decided that they, too, wanted to tie dye their t-shirts all of a sudden!

FOUNDING SPONSOR

After the Shock was created to give children with inhibitors the same annual camp opportunities and experiences as their peers in the bleeding disorders community. What is typically an extended weekend program (this year) was transformed into a virtual, multi-series experience over the course of 2 weeks. After the Shock is for children ages 0-18, open to the entire, immediate family, and packed full of education, support and – most of all – fun designed specifically for children with active inhibitors and their families. We play, learn, and grow while we build stronger relationships.

Brandon cautiously reveals his reverse, bleach-dyed shirt.

LEGACY SPONSOR

IN COLLABORATION WITH

We are knee-deep into “what if’s” and have been for quite some time. We all hoped that we would be at least close to the pandemic’s end. Our state, New Mexico has not allowed most students to return back to school. We managed to celebrate the milestones with drivethru parades and virtual meetings with teachers at our schools. Virtual reality!!! It is real, and we have all witnessed it. Nothing is like it was! The one positive that we all may share in these times - cherishing moments like the ones we had at After the Shock; Virtual Inhibitor Family Camp. Cherish being bored, as much as going out for a bike ride with your kiddos. Cherish watching that movie for the third time! Drive on a scenic road until your heart is content! Log off for a few hours to stop “liking” and “hearting” for once…. Log on with some friends on a video call for a few hours and really talk. Make the most of every connection that you can make. Cherish the memorable days, weeks and months because connections make times like these much smoother to move through.

COMMUNITY CHATTER

Letâ&#x20AC;&#x2122;s Talk About

FEELINGS What Are You Doing With Yours?

LIFELINES for HEALTH

Fall/Winter 2020

FEATURE

By: Gary McClain, PhD

o… how are you feeling? Hold on! Before you answer that. I am talking about, you know, emotions.

Glad, sad, mad, scared, ashamed…?

These are some of the words therapists use to help get their clients started on identifying their feelings. You might be using these words, among many others, to identify your own feelings. If so, good for you! However, you might also find yourself to be not so comfortable in talking about your emotions. In fact, not always even sure of what emotions you are experiencing. If being aware of your own emotions doesn’t come easily, and if talking about emotions is also hard for you, you are not alone. But having said that, emotions are part of being human. And being aware of our emotions, and being able to express feelings, enhances our overall wellness. As well as improving communication. If you are living with a chronic condition like a bleeding disorder, or have a child or other family member who is, you most likely experience all kinds of feelings. My clients often tell me stories about an especially difficult day, like when a bleed or another medical issue occurs, it can be an emotional roller coaster for everyone involved. And In Case That Wasn’t Enough, You Need a New Challenge… COVID-19 is Here!

Life sure has changed. We’re all hunkering down, as the saying goes. Tucked away in our homes as we comply with the request to reduce contact with others. And feeling, well, isolated. Even as we tiptoe into loosened restrictions that offer a little more contact with others, privileges that we are also warned may be snatched away in the event of an increase in infection numbers. In psychology school, we’re taught to encourage our patients not to isolate themselves. And now, by necessity, we all have to do just the opposite. But human beings are social by nature. So, we’re all feeling the isolation, along with the uncertainty about when we will return to some kind of normalcy. Did I say uncertainty? That’s something else that humans don’t do well with. We want to know!

Sure, we’re taking a few very slow, agonizing steps toward some kind of normal. But the world as we have known it? (Or whatever the future is going to look like.) Where’s that magic date? How are you feeling? If you’re anything like the people I am talking with every day, as a mental health professional, as a friend, as a family member, you are most likely feeling all kinds of emotions as you cope with life as we currently experience it. Frustration, fear, anger, sadness, disappointment. And more frustration. Ready to join me in raising your voice in one collective scream? So, more emotions bouncing around in your head, in your heart, in your home.

"Ready to join me in raising your voice in one collective scream?" 8

LIFELINES for HEALTH

Fall/Winter 2020

What Are You Doing With Your Feelings? Pretending that you don’t have feelings, also referred to as swallowing your feelings, doesn’t make them go away. Doing this only causes pain to yourself and the people who care about you. Here are some past examples: I recently spoke with a wife of a man who is living with a bleeding disorder who has had a couple of recent setbacks. She wept as she described how her husband has a lot going on emotionally but won’t talk about how he feels. The only emotion he shows is occasionally getting angry (including when she asks him to talk.) She knows he is suffering, as she is, and doesn’t know how to help him.

And a more recent example: Another client, a single parent, talked about how she doesn’t know how to talk to her children and family about how she’s feeling. Or if she even should. Due to COVID-19, her company is not doing well, and she’s concerned about family finances and healthcare if she loses her job. She

A teen is having the experience of being an outsider at his school. He has a slight limp because of his bleeding disorder and has been made fun of by some of the guys in his classes. The junior prom is coming up and he is not sure if any of the girls will want to go with him. He’s feeling pretty bad about himself right now, but he doesn’t want to admit it to himself. He tells himself he isn’t going to let any of this bother him, but of course it does. And he doesn’t want to tell his parents for fear they will also be upset, and he thinks they have had enough to deal with over the years.

wants to “be strong for my kids,” and fears that, if she shows how sad and worried she is, they “might start worrying, too.” And she is concerned that talking about feelings might cause her to break down. So, she avoids any talk about emotions. You can only guess at how lonely she must feel.

FEATURE

Notice anything here? The person with the feelings is trying to deny their own emotions. They think expressing feelings is a sign of weakness, or that they might lose control. Or that they need to protect their loved ones from how they feel. Unfortunately, all too often, my clients tell me that feelings are like an elephant in the room. Everybody in the

house is full of emotions, but nobody is talking about how they feel. Talking about emotions has to start with allowing yourself to be fully aware of how you feel, being honest with yourself about the feelings that a situation or event may be bringing up. In other words, taking ownership of your feelings. How do you do that, you might be asking? Well, I just happen to have a few ideas.

In the Moment, Engage Your Rational Mind Clients often say to me, “Sometimes I am just overwhelmed by feelings. They just run away with me. How can I keep that from happening?" Here’s how: Start by accepting that feelings are part of being human and own them! Many of us were brought up in families where emotions were not okay. As a result, we learned to swallow our own feelings. If this was your experience, you may also have learned, perhaps the hard way, that unacknowledged feelings build up and find their way out, often at the wrong place and time and with a much greater intensity than the situation warrants, like blowing up all over the place over something pretty insignificant. So, feel how you feel. And give yourself permission to tell other people how you are feeling, as feelings arise, not after you have been holding them back for a few days. This may take some practice. But if you do make it a habit of expressing your feelings on a regular basis, you will also feel less at risk for having your feelings fly out of control. In other words, let go of the assumption to automatically assume you don’t have a right to your feelings. Take a step back when you need to. When you’re caught up in a situation, it’s really hard to not to get overwhelmed emotionally to the point where you become alarmed by the intensity of your feelings and possibly concerned over the impact of your feelings on other people. Often after it’s too late and your reactions have done damage to yourself and others. You may also be likely to feel overwhelmed and out of control if you feel your emotions are being ignored or disrespected by others. This is a good time to take a step back from the situation. It might mean holding up your hand and stating that you need a couple of minutes. It might also mean leaving the room for a brief period of time. The point here is to do what you need to do to take care of yourself and your emotions. In the moment. Breathe. You can use your breath to help you from becoming overwhelmed by your emotions. The technique is called diaphragmatic breathing. A slow deep breath in through your nose, all the way in until you belly sticks out. And then slowly release your breath out through your mouth. Do this a few times and you will be amazed at the results. Diaphragmatic breathing helps to give you a sense of peace and calm. It also helps you to engage your rational mind so your emotions don’t run away with you.

LIFELINES for HEALTH

Fall/Winter 2020

A Few Additional Thoughts About Anger Sure, getting angry is part of being human. Keep in mind that anger is a primary emotion. When someone treats you or someone you care about in a disrespectful or aggressive manner, it’s only human to get mad. Nature has wired us to get angry. Where the complications arise is what we choose to do with all that anger. Emphasis on choose! However, anger is also what therapists call a covering emotion. In other words, we may have an underlying emotion, like fear, or disappointment, or sadness, going on. If we are avoiding acknowledging or experiencing those feelings, we may find ourselves veering into anger instead. And keep in mind that anger may feel more comfortable at the moment, and more acceptable than the feelings the anger may be covering. For example, have you ever felt deeply sad or disappointed, and found yourself on the edge of blowing up at someone? If so, you were using your anger to cover another feeling. And let’s face it, anger can sure feel better than whatever emotions it’s covering up...

Sadness can feel like one long

heartache that seems to hang over you like a dark cloud.

Fear conjures up lots of “what ifs,”

and reminds us that not only are we not in control of whatever situation is causing the fear, we might also be helpless to stop it from happening.

Anger can feel energizing, purposeful. Blowing up all over the place can make us feel like, at least temporarily, we are actually doing something. Not just sitting with sadness or fear or disappointment. The problem is that our anger is generally not aimed toward constructive action. Anger is all too often a destructive force, doing great damage to our wellness and our relationships. Wouldn’t it be a better idea to acknowledge the emotions we are trying to cover up with all that anger, and learn some creative ways to cope?

Disappointment is just plain old crushing. And so, it’s human nature to latch on to anger to cover it all up and, at least temporarily, make it go away.

In the moment of anger, take a step back. Do whatever it takes to engage your rational mind, whether it’s taking a few deep, calming breaths, or leaving the room for a moment to regroup, or whatever else you can do to help you think before you react. Get back in touch with what’s pushing that anger button. This will help you get a handle on that urge to go from zero to sixty. Don’t let yourself hide behind blowing up. Sometimes you’re mad because you’re mad. But other times, anger is

FEATURE

not anger at all. Instead it’s sadness or fear that you don’t want to admit to, and so you cover those feelings by blowing up. And if you’re feeling helpless in some way, like the challenges of living with a bleeding disorder or being the parent of a child with a bleeding disorder, anger is often the go-to response. What to do about that? Ask yourself: Am I really mad about something? Or is it too hard for me to admit how I really feel? It might help to sit down and sort your feelings out with someone who can listen. And remember, anger puts a wedge between you and the people around you, at a time when you could use some support. And be ready to apologize. You’re dealing with a lot, and you’re doing the best you can. As are your loved ones. If your anger got the best of you, admit it. Resolve to do better next time. Ask for help. This is also called damage control.

Come on Guys! You Have Feelings, Too! You might remember the “strong, silent type” of guy from the movies in the 40’s. He’s the self-reliant guy with the poker face who never lets anyone know how he's feeling. Instead, he was all about taking charge. Well, guess what? A lot of guys are still walking around holding in their emotions. And it’s not helping them, nor is it helping the people who care about them. What about you? Or what about the guy in your life? It’s not easy opening up about how you feel when you’re a guy. I know I’m making a generalization here. Lots of guys have no problem talking about feelings. But it seems to me that most guys do. And I’m not just hearing that from the guys themselves. More often I’m hearing it from the women in their lives – their wives or partners, their children, their parents. Human beings have emotions. Swallowing them or pretending they aren’t there doesn’t make them go away. And when men won’t talk about emotions, they miss out on

LIFELINES for HEALTH

the opportunity to connect with their loved ones, to be supportive, and to get support. I also notice that the one emotion men are more likely to be comfortable expressing is anger. It is somehow more acceptable for men to get mad than it is for them to show how sad or how scared they are. Sure, the challenges of living with a condition like a bleeding disorder can make you mad. But anger can also be a way to cover up – or deny – fear, sadness, or vulnerability. And anger can put up a wall between you and everyone else. What I tell the men I speak with is that holding in their feelings isn’t helpful. It can affect them physically. It can lead to stress, depression, and anxiety. And it can place a wedge between them and the people around them. Men often tell me they don’t talk about feelings because they don’t want to lose control of themselves, to appear weak, or not be strong for their loved ones. Here’s what I tell them: Letting those feelings out doesn’t mean you will lose control. Actually, it’s the opposite. Because feelings kept inside will build up over time. They have to go somewhere. They may cause internal stress, which can have a negative effect on your well-being, and even affect your health. Built-up emotions can lead to tension that never seems to leave, which can result in high blood pressure, heart problems, and stomach issues, among others – or mental health conditions like depression and anxiety. Feelings may also “leak out.” Like when you find yourself or your child blowing up over something that normally wouldn’t bother you/them and cause damage to relationships. Or, on the other hand, breaking down over something relatively small, and finally letting out all that sadness that may have built up, and not necessarily at the best time to break down.

Fall/Winter 2020

There's no room for emotion at my table.

FEATURE

Start the Day Being Aware of Your Emotions Here’s a way to get on top of your emotions proactively: Each morning, do an inventory of your emotions. Ask yourself: How am I feeling today? Glad? Great! Or sad? Scared? Frustrated? Just plain old mad? Ask yourself what’s causing you to feel that way. Most likely you can identify thoughts or recent events that are bringing up all those feelings. If you’re angry, ask yourself why. And if you can’t come up with an answer, cast a wider net for other feelings that may be behind all that anger. During this time of COVID-19, with many of us working at home and spending more time with family members, it's especially important to stay aware of emotions. Beware of helplessness. Often, thoughts and events cause us difficulty because they remind us that so much of life is out of our control. Nobody knows this better than someone who is living with a chronic condition like a bleeding disorder. As I said earlier, sadness, disappointment, and fear may make us feel helpless. And humans don’t do well with helplessness.

LIFELINES for HEALTH

Fall/Winter 2020

Take a look at what you can and can’t control. Taking a moment to acknowledge your level of control, or lack thereof, can help you to maintain your perspective. Is it time to recite the serenity prayer, and accept what you can’t control? Or is it time to take some action to address an issue you have been pushing aside? Know what you need to do to stay in a mentally healthy place. Again, be proactive. If you start the day with feelings that are hard to sit with, like sadness or frustration or fear, then consider what you can do to help yourself cope. Is there someone you can call for a pep talk? Do you need to take time for a walk? Maybe some meditation? A break with some calming music? Or maybe a religious or spiritual practice? I always recommend to clients that they have a toolbox of coping skills they can pull from, as needed. Maintain self-awareness. It’s only human to feel overwhelmed when something happens that presses a button. So how do you stop that from happening? The key is to be aware of yourself, each and every moment of the day. That means knowing when you might be feeling especially vulnerable. Being your authentic self can enhance your wellness. Doing your morning emotional inventory will kick-start your self-awareness for the rest of the day.

And don’t assume your loved ones can’t listen to how you feel. One of the biggest excuses I hear for holding in emotions is protecting other people. In the first place, they can see your feelings all over your face so, chances are, you’re not fooling anybody. And in the second place, your loved ones may not be as fragile as you think they are. Not sure if they can talk about feelings with you? How about asking? And while you’re at it, volunteer to listen to how they feel, too. Encourage your children to express emotions!

Make Your Home a Safe Space for Emotions Help your family members to feel comfortable talking about feelings. This will have an incredibly positive impact on the emotional wellness of everyone in your household: Practice using feeling words. My clients have said to me that they’re afraid that if they actually talked about how they’re feeling, the roof might come crashing down on them. I can pretty much guarantee that won’t happen. So give it a try. Start with something about how your day went: “I felt frustrated at work today when…” Or, “When I saw that traffic was backed up, I was worried that…” Wow, you just expressed a feeling. That wasn’t so bad, was it?

Remember, kids know how their parents are feeling, and they may as a result hold back on saying something they fear may upset them. So they may be holding back on talking about their feelings and not get the support from their parents they need. Kids are feeling especially stressed as they cope with the many changes that COVID-19 has brought to our lives. Have a heart. Living with a bleeding disorder brings up all kinds of emotions. You can’t control how you feel, but you don’t have to let your feelings control you. Accept your own feelings – all of them – and let yourself be human. Be aware of the range of your emotions. Sure, feelings can be scary. But allow your feelings to see the light of day. Give yourself a break, and you’ll be much more capable to give others a break, too. We’re all in this together!

Gary McClain, PhD ,is a therapist, patient advocate, blogger, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

FEATURE

Exploring the science behind gene therapy research Gene therapy research has the potential to bring an entirely new option to people with specific genetic conditions. Many gene therapies are in clinical trials to evaluate the possible risks and benefits for a range of conditions, including hemophilia. HemDifferently is here with gene therapy education, providing accurate information on the basics and beyond. What questions do you have? Get them answered. Explore gene therapy at HemDifferently.com.

No gene therapies for hemophilia have been approved for use or determined to be safe or effective.

THE 5 STEPS OF INVESTIGATIONAL GENE TRANSFER One method of gene therapy currently being explored in clinical trials is called gene transfer. This approach aims to introduce a working gene into the body to determine if it can produce a needed protein.

STEP 1 CREATING A WORKING GENE A working copy of a mutated gene is created in a laboratory.

STEP 2 BUILDING A THERAPEUTIC VECTOR A therapeutic vector is used to protect the working gene and serves as a transport vehicle for the gene to enter the body. The therapeutic vector is created from a neutralized virus, meaning no viral genes remain inside.

STEP 3 DELIVERING THE WORKING GENE A single, one-time infusion delivers large numbers of therapeutic vectors into the body.

STEP 4 MAKING PROTEINS Once in the body, the new working gene is designed to provide instructions for the body to make the protein it needs on its own. =Proteins.

STEP 5 MONITORING AND MANAGING HEALTH Clinical trial participants are regularly monitored to better understand the safety of the gene transfer and to evaluate its effect on the body.

Complimentary

By: Angela Lambing, MSN, ANP, GNP

Alternative

...Uses in Pain for Bleeding Disorders Part 2 This is the second installment in the review of complimentary pain management therapy reviewing the available research for persons with bleeding disorders.

Therapies included in this domain are:

n the first installment, the definition of complementary and alternative therapy (CAM) was reviewed as well as the mind body modalities available. The second domain under review is the Manipulative and Body-based practices. “Manipulative and body-based practices encompass a system of therapies that use either manual manipulation or movement of one or more parts of the body to address structural or systematic imbalances of the bones and joints, the soft tissues, and the circulatory and lymphatic systems.”1

Manipulative and Body-Based Practices •

Massage

•

Acupuncture

•

RICE (rest, ice compression, and elevation)

•

Reflexology

•

Manipulation or chiropractic

Massage involves the “rubbing and kneading of muscles and joints of the body with the hands, especially to relieve tension or pain.”2 There are no research studies that explore this modality with persons with bleeding disorders. A recent article published in Massage Magazine highlights recommendations made by a massage therapist when persons with bleeding disorders are considering massage for pain management. “A massage therapist needs to be especially careful with manipulating joints, as bleeding can easily occur at the major joint sites. Modalities which mobilize or stretch limbs may cause unnecessary stress upon joint structures. Friction strokes, which are classically ideal for addressing joints, need to be performed more cautiously. Deep tissue massage can carry the risk of increased bruising as well.”3 Based upon the available information, it is important to know your massage therapist and their ability to help. Use of this therapy should be reviewed with your treatment center, where the possibility of factor infusions prior to massage may be required.

LIFELINES for HEALTH

Fall/Winter 2020

Acupuncture involves pricking the skin or tissues with needles, used to alleviate pain and to treat various physical, mental, and emotional conditions.4 This method has been well used in Chinese medicine gaining interest in Western medicine. The first documented use of acupuncture in hemophilia was in 1981 where Koh5 identified 2 case reports. Patient #1 was pain free for more than 5 months post treatment, and patient #2 identified a reduction in pain medication usage after acupuncture therapy. LaBaw in 20026 identified a case report with 1 patient who was successfully managed. There were 2 researchbased studies identified. Wallny et al.7 did a single blinded study in 2006 where 10 of 12 patients reported reduction in pain after acupuncture therapy without procedural bleeding or bruising. Lambing et al.8 had 9 subjects in a study, where half received acupuncture therapy in India without factor pretreatment with the remaining subjects receiving factor pretreatment prior to acupuncture therapy in the United States. None of the subjects whether they received factor pretreatment or not had any bleeding or bruising. Six of the 9 subjects reported improved pain scores by at least 50%

and 7/9 subjects reported improved quality of life scores. Martini et al (2018) identified a case report of acupuncture usage in a female with type III von Willebrands disease to manage a migraine.9 In all cases, factor therapy prior to treatment was recommended. In Japan, a case report identified the resulting ileopsoas bleed of an individual who used acupuncture, despite regular factor therapy illustrating the importance of proper factor dosing at prescribed times and coordination of care with the treatment center.10 Hubscher et al. (2008) utilized acupuncture for muscle soreness including some hemophilia patients although it is unclear if factor infusions were utilized prior to acupuncture treatment.11 And most recently in the Haemophilia journal this year, 28 patients participated in a single blinded randomized trial between acupuncture and transcutaneous electrical nerve stimulation (TENS), receiving 5 sessions of 20 minutes each. There were significant improved pain scores and quality of life measures. The acupuncture group reported high satisfaction with therapy. There were no

TABLE 1: Questions to ask when considering acupuncture therapy if you have a bleeding disorder11 1. Talk to your hemophilia treatment center first to discuss what is best for you. You may be encouraged to do prophylaxis. 2. Choose an acupuncturist who is certified by an appropriate agency. Referrals by others you trust can be helpful. 3. Do your homework, learn about the process, and learn about the acupuncturist. You can check for certifications on the web. 4. Success with acupuncture may require several treatments before an improvement is noted, and may

require occasional repeat treatments to maintain optimal relief. 5. Talk to the acupuncturist to know what to expect, what is a ‘normal’ response, and what may be different. 6. Remember that pain management requires a multimodal approach. What may work for you may not work for others. You have to determine what strategies will work best for you. 7. Keep an open mind!

WHAT’S NEW?

noted improvements in joint scores between the 2 groups18. It is important that you converse with your treatment center when considering this treatment, and as well, ensure that the acupuncturist is licensed and familiar with hemophilia. The Hemophilia Federation of America (HFA)12 and Hemaware13 published excellent reviews on this modality, providing a guideline and questions to ask before embarking on this method and are included in Table 1 on the previous page.

Rest, ice, elevation, and compression (RICE) have been well documented in the literature as the staple for pain management in persons with bleeding disorders whether managing acute or chronic pain. In the National Pain Study.14 RICE was the most common method of pain management; Rest 81% (acute) vs. 84% (chronic); Ice 78% vs. 58%; Compression 65% vs. 58% and elevation 69% vs. 47%. It is noted that individual responses of success exist with each of these methods.

Reflexology is another method of massage used to relieve tension and treat illness, based on the theory that there are reflex points on the feet, hands, and head linked to every part of the body.15 Vicol et al.16 published a mental health practitionerâ&#x20AC;&#x2122;s guide to HIV/AIDS in 2013, where reflexology was used with HIV patients, some who also had hemophilia although results are not available. The same principles and guidelines for massage with persons who have bleeding disorders still apply.

Body Manipulation is similar to chiropractic manipulation focusing on the relationship between the bodyâ&#x20AC;&#x2122;s structure, mainly the spine, and its functioning.17 Currently no research exists with this body based practice in persons with bleeding disorders.

Given the manipulation aspect of the body with all of the body- based therapies, similar recommendations would apply including the need to converse with your treatment center regarding best treatment approaches and if factor infusions are required prior to any therapies discussed. Individual responses are noted with each of the therapies

LIFELINES for HEALTH

Fall/Winter 2020

described; one therapy may work for one person, but not for another. In the final installment, the remaining domains will be reviewed which include natural products and energy therapies.

References 1. What is Manipulative and body based practice? Retrieved from: https://www.google.com/search?q=ma nipulative+and+body+based+therapy&rlz=1C1CHBF_en CA893CA894&oq=manipulative+and+body&aqs=chrom e.3.69i57j0l7.6267j0j7&sourceid=chrome&ie=UTF-8

for chronic headache in a patient with type III von Willebrand Disease. Acupuncture in Medicine. December 2018. Retrieved From: https://journals. sagepub.com/doi/abs/10.1136/acupmed-2014010632?journalCode=aima

2. Definition of massage. Retrieved from: https://www. google.com/search?q=definition+of+massage%5C&rlz=1 C1CHBF_enCA893CA894&oq=definition+of+massage% 5C&aqs=chrome..69i57j0l7.5558j1j7&sourceid=chrome &ie=UTF-8

11. Hubscher M et al. Effects of acupuncture on symptoms and muscle function in delayed-onset muscle soreness. The Journal of Alternative and Complementary Medicine. 2008; 14(8). Retrieved from: https://www. liebertpub.com/doi/abs/10.1089/acm.2008.0173

3. Gialis, J. (2016). Massage for clients with hemophilia. Massage Magazine. Retrieved from: https://www. massagemag.com/massage-for-clients-withhemophilia-35004/

12. Needles and Hemophilia: Does this make sense? Hemophilia Federation of America. Retrieved From: https://www.hemophiliafed.org/news-stories/2012/12/ acupuncture-needles-hemophilia/

4. Definition of Acupuncture. Retrieved from: https://www. google.com/search?q=definition+of+acupuncture&rlz=1 C1CHBF_enCA893CA894&oq=definition+of+acupunct& aqs=chrome.0.0j69i57j0l6.6952j1j4&sourceid=chrome& ie=UTF-8

13. Aldridge S . Acupuncture of Hemophilia pain management. Hemaware. December 2010. Retrieved from: https://hemaware.org/mind-body/acupuncturehemophilia-pain-management

5. Koh TC. Acupuncture therapy in hemophilia: A report of 2 cases. American J acupuncture. 1981; 9(3): 269-70. 6. Rosted P & Jorgensen V. Acupuncture used in the management of pain due to arthropathy in a patient with haemophilia. Acupuncture Medicine. 2001; 20(4); 193-5. 7. Wallny TA, et al. Successful pain treatment in arthropathy lower extremities by acupuncture in hemophilia patients. Haemophilia. 2006; 12: 500-2. 8. Lambing A, et al. Use of acupuncture in the management of hemophilia pain. Haemophilia. 2012: 18(4): 613-17. 9. Kasuya D. A case of hemophilia A that began Iliopsoas muscle hematoma by acupuncture treatment. Journal of the Japan Society of Acupuncture and Moxibustion . 2008;58(5):766-774. Retrieved from: http://wprim. whocc.org.cn/admin/article/articleDetail?WPRIMID=374 293&articleId=374293

14. Witkop M et al. A national study of pain in the bleeding disorders community: A description of haemophilia pain. Haemophilia. 2012; 18(3); 3115-9. 15. Definition of Reflexology. Retrieved from: https://www. google.com/search?rlz=1C1CHBF_enCA893CA894&biw= 1205&bih=615&ei=RjaCXrz5NpjXtAbkyrS4BA&q=reflexo logy+definiti on&oq=reflexology+definition&gs_lcp=CgZ wc3ktYWIQAzICCAAyAggAMgYIABAWEB4yBggAEBYQHjI GCQBxAeOggIA BAIEAcQHjoKCAAQCBAHEAoQHjoICAA QBxAFEB46BQgAEM0COgUIIRCgAVC31D9Ym8dAYLHM QGgDcAF4A4AB7AGIAc0ekgEHMjMuMTEuMpgBAKABA aoBB2d3cy13aXo&sclient=psy-ab&ved=0ahUKEwi8tM2 F5sLoAhWYK80KHWQlDUc4HhDh1QMICw&uact=5 16. 16. Vicol MC. Alternative and traditional healing. A mental health practitionerâ&#x20AC;&#x2122;s Guide to HIV/AIDS. New York; Springer. 2013. 17. 17. Definition of body manipulation. Retrieved from: https://www.brainline.org/article/manipulative-andbody-based-practices-overview

10. Martini A et al. Acupuncture and auricular cryotherapy

Angela Lambing has been a nurse for 40 years; 30 years as a nurse practitioner certified in adult primary care and geriatrics. She spent 15 years as the Henry Ford Hospital HTC nurse, responsible for all aspects of bleeding and thrombotic disorders. She is an expert in pain management in the bleeding disorders community, having completed many research projects in this area. She is widely published and has given talks on a variety of topics, locally, nationally, and internationally. Her last 5 years was spent as a clinical expert and educator for Bayer Health Care. She is now retired, but still focusing her energies and knowledge in the area of bleeding disorders. In the past few years, she has been one of many national experts on pain participating on the MASAC pain task force where she continues to provide support in this area.

WHATâ&#x20AC;&#x2122;S NEW?

Market Research

Par ticipate?

by Joe Gibbons

ou receive an exciting invitation to participate in a market research survey. They promise it will be a very short survey, there may be a follow up interview with a moderator. A professional research firm wants to collect your responses for their client regarding your attitudes and perceptions about a new product and/or service. Targeted FaceBook ads invite you to share your insights and information. Compensation is in the form of a prepaid gift card, or check, but do you want to participate? There are multiple types of market research being performed today. Non-profits, for-profits, individuals, politicians and more are all seeking data to make relevant decisions, useful communications and strategic directions. If done properly, market research can be a very useful tool to enhance current products, create new products, align practical services and communicate more effectively with your audience. For you, it is a chance to be heard. Many people like to give feedback and share their experiences to see if they can influence change in a positive way for themselves, their family members and loved ones, or the community. Of course, participation is directly influenced by demands on your schedule and the time it may take to engage in the activity. One of the most important things to insist upon is the confidentiality of the information you are about to provide. You should ask them straight forward what they are doing to safeguard that your information remains private and blinded. In other words, they will not share your contact information with anyone outside of their market research firm and the information you provide has no identifiers. This means that no one will be able to tell or link a survey to â&#x20AC;&#x153;youâ&#x20AC;? who has provided this information. If they are hesitant to discuss, or do not have a statement, it is recommended that you decline the survey.

Every market research firm should have a statement of purpose regarding what their market research is trying to achieve and their confidentiality policy.

If the survey is done electronically, the explanation should be written on a page for you to read or be placed right above the survey for your reference. If your participation is live, the moderator should be able to share with you the full explanation of its purpose. If any of this makes you uncomfortable or you do not think the company has a clear policy, please feel free to decline. The research firm will need an address or method to send your compensation. Again, be sure that is the only purpose, and you are comfortable with the knowledge that this is its only use.

LIFELINES for HEALTH

Fall/Winter 2020

WHATâ&#x20AC;&#x2122;S NEW?

Committed to serving the needs of the hemophilia community and physicians

In March 2020, Catalyst Biosciences announced the pivotal Phase 3 study design for MarzAA in individuals with Hemophilia A or B with Inhibitors. The open-label trial will evaluate the efficacy of marzeptacog alfa (MarzAA) a potent, subcutaneously (SQ) administered, next-generation recombinant Factor VIIa variant, to treat episodic bleeding. Catalyst expects that the trial will enroll its first participant before 2020 year end. The Phase 3 Crimson-1 global study will enroll individuals who experience episodic bleeding. Crimson-1 will evaluate the safety and efficacy of SQ MarzAA in the treatment of approximately 230 bleeding episodes in approximately 75 patients, compared with their prior standard of care in a similar number of bleeding episodes. Catalyst is a research and clinical development biopharmaceutical company focused on addressing unmet needs in rare hematologic and systemic complement-mediated disorders. Our protease engineering platform includes development programs in hemophilia and a research program on subcutaneous (SQ) systemic complement inhibitors. SQ delivery is less invasive, faster to treat, and more convenient than intravenous (IV) drugs currently on the market. Our most advanced asset, MarzAA has completed Phase 2 development in prophylaxis and met its primary endpoint of significantly reducing the annualized bleed rate (ABR) in individuals with hemophilia A or B with inhibitors. SQ dalcinonacog alfa (DalcA) is being developed for the treatment of hemophilia B and has demonstrated efficacy and safety in a Phase 2b clinical trial. We have an early stage Factor IX gene therapy construct - CB 2679d-GT - for Hemophilia B that has demonstrated superiority compared with the Padua variant in preclinical models.

Pipeline Hemostasis

P 1/2

Partner

SQ Marzeptacog alfa (activated) “MarzAA” Hemophilia & bleeding disorders (rFVIIa) SQ Dalcinonacog alfa “DalcA” Hemophilia B (rFIX) FIX-Gene Therapy Hemophilia B (CB 2679d-GT)

www.catalystbiosciences.com

WHAT’S NEW?

There are generally three types of information being sought: quantitative, qualitative, or a combination of the two. Quantitative seeks to

Extended Half-life Product Sales

assign a number, percentages, or statistical significance to groups of data. This may resemble units sold, market share, or something like emerging trends. It is a snapshot. A hypothetical example may be that a certain class of products, like “extended half-life products” is expected to see 3%unit growth in 2021 versus “standard acting half-life products” which will see a 2%unit decline. In the report the firm will attempt to explain the reason for the differences at a topline level. Again, a purely hypothetical example.

Standard Half-life Product Sales

Simulation, only. Illustration does not reflect actual sales or projection of sales for said products.

Qualitative data tends to try to find out “why”, or what is the motivation behind someone’s behavior. There will be many open-ended questions to record your feedback. An example may be - someone wants to find out why a parent gives their child’s prophylaxis factor in the evening when many healthcare providers recommend first thing in the morning. These types of projects may help to uncover perceptions or “gaps” of information. Another hypothetical example could be - biotechnology companies attempt to reveal what “gaps” of information there may be regarding gene therapy. The data will assist them to identify areas where they need to focus to make this possible new therapy easier to introduce when approved by the FDA. By uncovering these gaps, a corporation may develop education programs, pamphlets, and brochures to address the perceptions and assuage any concerns. Some methods used to collect this data are electronic, phone and/ or live interviews, focus groups, and written narratives. As you have probably figured out by now, the third type of data often obtained is a combination of the two. A firm may ask you to fill out a quantitative survey first and when completed, ask you specific questions about “why” you answered a question(s) one way or the other. The freshness of the survey and the proceeding qualitative “why” is extremely useful.

LIFELINES for HEALTH

Fall/Winter 2020

There is also primary and secondary market research. Secondary is a report that can be purchased from the

publishing company. This means they have reached out on their own to obtain information to compile, analyze, and construct a report that would bring value to a purchaser. Most times this is topline, aggregate data to use in development, business, or market plans. This could be (another hypothetical example) that the population is expected to expand through new births of just over 10 percent for the next five years.

Primary market research is when a company will survey directly or hire a third-party to conduct the specific research the company is trying to obtain. Since many bleeding disorders are rare, this type of information can be more useful to companies since the level of detail is usually not available in secondary research.

One very common question is...

“Why won’t the market research firm share who they represent unless specifically instructed by the sponsor?” This is done, ideally to reduce the potential for bias. Some people tend to alter their answers positively or negatively when they find out who is sponsoring the survey. Even the way questions are constructed can lead to compromised answers that a good, qualified third-party can minimize by assisting in the development and structure of the questions. A good, sound survey should reveal and uncover information for the sponsor that can be used to improve plans, products, and services.

Acme Pharma Co.

WHAT’S NEW?

Years of experience indicate that quantitative surveys to identify gaps, always led to more questions, and the qualitative to determine “why.” Why do you infuse in the evening rather than in the morning? Why do you store all the factor in the refrigerator rather than room temperature? Do you think your child will continue prophylaxis in college? Why, or why not? What are the pros and cons for “YOU” regarding new therapies like gene therapy? I always felt very uneasy making decisions solely on quantitative data, or qualitative data versus a combination of the two.

Recruitment is one of the most time-consuming aspects of market research. Most of us are very busy with our day-to-day responsibilities, so the biggest challenge is finding the time and meeting deadlines. A quantitative survey over the internet, email, or mobile phone may give people greater flexibility. Email and apps allow access to a wide range of people in a timely way. In most cases you want the recruiting to be anonymous. This is done to try to minimize bias and include others for diverse opinions, especially from people not on your product or utilizing any services you may offer. For qualitative research, an hour or so is required and your time is a premium. This is why many will offer compensation for your participation. A professional moderator is usually leading the discussion whether in a

LIFELINES for HEALTH

Fall/Winter 2020

Zoom conference, in-person focus group, or individual phone interview. Almost anything can be researched. On one occasion many years ago, Company A wanted to do a concept test on a potential new advertising and marketing campaign. Concepts are ideas one seeks to convey; in this case, through imagery related to the target audience. The advertising agency developed about 16 visual concepts. Internally, we narrowed it down to six (6) that we wanted to field test with 10 to 12 parents with children and then with adults with hemophilia A. The parents and adults came in to provide feedback on the ideas.

One particular concept that I thought would be very powerful was a poster that showed a reclining chair facing a large bay window and an open door. Through the window you could see a wide open, brilliant blue sky, wispy clouds, undulating landscape and beautiful, shining sun. The reclining chair facing the door was empty. In my mind, it conveyed the message “the sky is the limit.” The person on that product would be able to access their full potential because they were now free from staying home in a protected environment. I could see it now, let the child or adult be active and outside doing chores, errands, playing, working, or going to school. I thought it was a very positive outcome of a person leading a normal life. The panel participants provided feedback. They thought somebody had died and all the imagery of the empty chair and the bright light meant the person was at peace now.

Ouch! A crucial example of why you do market research! In this case, my sentiments and the company’s interpretation of needs were not the same as their target audience. And the target audience’s responses should be the driving force in the decisions. What is important to the consumer may not be as important to the medical community, thus you could see different messages. Providing advice, insight, and opinions as a patient to market research can be rewarding and satisfying. The chance to be heard is very important and should allow a company to improve its services or offerings. If you feel uncomfortable about the confidentiality of your data or the research itself, feel free to decline or not respond. You have to feel secure. The feedback you provide in a well -structured environment, or survey is important in the evolution of better care in the community.

Joe Gibbons has been working with and engaged in rare disorder communities since 1990 in a number of roles including marketing, market research, business development, national accounts and sales. Currently, he is consulting with the Market Research Bureau (MRB) on new trends, products, and treatment habits with consumers and medical professionals. Joe can be reached at josephgibbons94@gmail.com.

WHAT’S NEW?

R ESILIENCE

ecognize Your Own

And then...

LIFELINES for HEALTH

Fall/Winter 2020

by Dr. Gary McClain, PhD

wo steps forward, one step back. Two steps forward…

If you are living with the challenges of a chronic condition – or if your family member is – then this phrase most likely has special meaning to you. The successes, the frustrations, and those unexpected curveballs that can come your way. But, yet you keep yourself going, one step at a time. How do you do it? Psychologists call that resilience. The ability to recover or adjust to misfortune or change. In other words, picking yourself up, dusting yourself off, and getting back on the path. How’s your resilience these days? My clients who are living with a chronic condition – and learning to roll with the ups and downs – often tell me that this experience has taught them to recognize their own resilience. They are able to tap into sources of strength, and to be resourceful, in ways they never thought possible. Yet, at the same time, one of those curveballs, or a series of curveballs, can leave you wondering if you’re all that resilient after all. So you might ask: Are some people more resilient than others? In other words, is resilience a gift that some are given while others aren’t so lucky? Actually, no. The good news is that resilience can be learned by following some basic guidelines for practicing resilience-building skills to develop a more resilient mindset. And practicing these skills can also help you to further strengthen your resilience. Kind of like toning up at the gym. Here’s how to get started:

FAMILY MATTERS

1. Take an inventory

2. Stay hopeful

Use the past as a teacher. Think about the rough spots that you have hit over the years. What’s gone well for you? And not so well? Life’s tough lessons can leave us with a gift: experience. Review how you have dealt with challenges in the past. Use that learning to take an inventory of what’s in your resilience toolbox. This will help you to identify your strengths as well as to better understand what tools you want to add.

Decide to focus on what’s going right in your life. Take the time to recognize the simple pleasures that exist all around you. Remind yourself of everything that is good in your life. Tell that bleak voice of negativity to be quiet, while you pay more attention to what’s possible.

And then, decide to believe in yourself. Being a resilient person starts with believing in your own potential. Bolster your own self-esteem by giving yourself a daily pep talk, with messages like “I can do it” and “I’m ready to handle whatever comes my way.” Intention leads to action.

LIFELINES for HEALTH

Fall/Winter 2020

3. Stay connected to your support network Who’s in your court? Make a list of the people in your life that you count on to stand by your side when you need a listening ear, and who count on you in return. Stay in touch with them on a regular basis, including regular check-ins with each other. Schedule time together. Reach out when you’re feeling alone. Vent when you need to. Be supported and give support in return. We are all in this together!

4. Laugh (or at least smile)

5. Maintain your self-care

Having a sense of humor is a great antidote for stress. And let’s face it, sometimes you just gotta stand back, shake your head, and laugh. Better yet, find someone who can have a laugh along with you. Humor helps you to maintain your perspective and avoid getting caught up in the downward spiral of helplessness. Humor and resilience go hand in hand.

It (almost) goes without saying that, to be resilient, you need to feel your best. That means staying on top of your health by getting regular check-ups, staying in touch with your healthcare team between visits, being compliant with your treatment, and maintaining your self-care routine. By the way, this goes for children and parents! Just had to throw that in.

6. Update your knowledge – continuously Stay abreast of the newest thinking about what you can do to take the best possible care of yourself, and how your loved ones can take care of themselves. Medical science is constantly on the move, so keep up with what’s new in treating your condition. Be your own expert. Knowledge is power!

FAMILY MATTERS

7. Keep your problem-solving muscles exercised When you bump up against a new challenge, go off by yourself and do some brainstorming. Define the challenge. Review your strengths, as well as the resources that you have to draw upon to solve it. Come up with a potential solution. By going through this process, you will have a clearer idea of what you can do, including what’s under your control, what you can’t control, and where you need help. This is resilience in action.

LIFELINES for HEALTH

8. Accept that life is always changing Humans are hard-wired to avoid change. But we know that life keeps moving, and that means that nothing stays the same forever. In other words, we aren’t in control of everything that occurs in our lives, even if we think we should be. Fighting change is like fighting against yourself, and your own potential for growth. So give up the battle and go with the flow. You’ll be surprised at how much more energy and optimism you’ll have.

9. Know who to ask for help, and then ask Keep your resource list up to date. Part of being resilient is keeping track of the resources that you can draw upon when you need them. People who are willing and able to step in and lend you a hand or give you some guidance. Services and organizations that you can enlist. Information sources that you can tap into. Resilience doesn’t mean doing it alone, it means asking for help when you need it.

Fall/Winter 2020

10. Have a vision for the future Now, back to the hope thing. Take time to create a vision for the person that you want to be in life – how you want to live, what you want to accomplish, what you can do to be there for the people that you care about. Having a vision for our future motivates you to be more resilient. While you’re at it, create a vision for your family. Think: Optimistic. Realistic. Flexible.

11. And when the going gets tough… Remember that the tough go shopping Shrink shopping, that is. If you need some additional help in strengthening those resilience muscles, then talking with a mental health professional can give you some additional perspective and help you develop new resilience skills as you face life’s challenges.

Two steps forward, one step back. But two steps forward again. Look how far you’ve come in the face of a lot of challenges. Celebrate your own resilience! And challenge yourself to build even more resilience into your life!

FAMILY MATTERS

Twists & Turn s of Bleeding Disorder

ents

m Treat

he year 2020 has certainly created a wide array of confusion and unpredictable outcomes from work and school, to our home and social lives. And it doesn't stop there. Bleeding disorder treatments (old and new) have taken a few unexpected paths as well. So, buckle-up for the bumpy ride as we present some of the biggest surprises.

Novo Nordisk Concizumab Update In the spring edition of LifeLines for Health https://ches.education/newsletter, we reported that Novo Nordisk pushed pause on 3 trial programs-Explorer 5 in phase 2 and Explorer 7 and 8 both in phase 3 due to the development of non-life threatening blood clots that developed in three (3) patients. The trials are testing the safety and efficacy of Concizumab, a subcutaneous prophylactic treatment delivered in a pen device to reduce the number of bleeds in both hemophilia A and B patients regardless of inhibitor status. On August 13, 2020, Novo Nordisk opened up the Explorer trials five months after they were paused in March 2020. The company said in a statement. â&#x20AC;&#x153;Novo Nordisk has together with relevant authorities identified a new path forward for concizumab. New safety measures and guidelines, based on analysis of all available data, have been agreed with the FDA and the clinical hold has been lifted.â&#x20AC;? Source: https://ml-eu.globenewswire.com/Resource/Download/32302d78-439f-4a97a655-3f7b96e2cc76

LIFELINES for HEALTH

Fall/Winter 2020

by Janet Brewer, M.Ed

Gene Therapy Update

Some patients however, reporting drops in FVIII levels that raises the question regarding long-term durability.2

A surprise ruling by the FDA on August 18, 2020 regarding BioMarinâ&#x20AC;&#x2122;s Biologics License Application (BLA) for hemophilia A gene therapy valoctocogene roxaparvovec (valrox), determined that the companyâ&#x20AC;&#x2122;s application is not ready for approval.

BioMarin was poised to be the first company to release a gene therapy option for treatment for Hemophilia A. The FDA had granted valoctocogene roxaparvovec Priority Review status and Breakthrough Therapy and Orphan Drug designations on October 26, 2017.

The FDA issued a new recommendation for two years of data that provides substantial evidence of durability using Annualized Bleeding Rate (ABR) as the primary endpoint. This new recommendation had not been required previously. In November 2019, the Phase 3 study referred to as 270201, was fully enrolled. BioMarin will be required to submit a two-year follow up in November 2021 for all participants regarding safety and efficacy.1 In March 2020, ASH Clinical News reported the pricing for valrox would be $2 million to $3 million. Annualized bleeding rates dropped from an average of 16.5 bleeding episodes per year to an average of zero, sustained over 3 years for some trial participants.

Source: https://investors.biomarin.com/2020-08-19BioMarin-Receives-Complete-Response-Letter-CRL-fromFDA-for-Valoctocogene-Roxaparvovec-Gene-Therapy-forSevere-Hemophilia-A https://www.ashclinicalnews. org/online-exclusives/ biomarin-sets-2-3-millionprice-tag-hemophilia-genetherapy-candidate/

9 BLOODLINES

Stimate Recall Ferring Pharmaceuticals announced a series of recall notices beginning July 21, 2020 and expanded on August 13, 2020 to include all lots of DDAVP Nasal Spray (10 mcg/0.1mL), Desmopressin Acetate Nasal Spray (10 mcg/0.1mL), and STIMATE Nasal Spray (1.5 mg/ mL). Ferring manufactures Stimate and it is distributed and sold in the US by CSL Behring. The recall was necessitated due to superpotency or amounts of desmopressin higher than specified. These out of specification results were obtained during routine testing. The Medical and Scientific Advisory Council (MASAC) of NHF issued Medical Advisory #427: Stimate Recall Update https://www. hemophilia.org/Newsroom/MedicalAdvisories/Medical-Advisory-427Stimate-Recall-Update. If you as the patient or a healthcare provider have any questions you are encouraged to call CSLâ&#x20AC;&#x2122;s Medical Information line at 1-800-504-5434 or email to MedinfoNA@cslbehring.com.

LIFELINES for HEALTH

Fall/Winter 2020

Source: https://www.fda.gov/safety/recalls-market-withdrawalssafety-alerts/ferring-us-issues-voluntary-nationwide-recallddavpr-nasal-spray-10-mcg01ml-desmopressin-acetate?utm_ campaign=Desmopressin

Patient Notification System

Participating PNS Manufacturers Aptevo (Saol Therapeutics)

Kedrion

Bayer

Novo Nordisk

Biogen (now Bioverativ)

Octapharma

Bioverativ

Pfizer

CSL Behring

Saol Therapeutics

Grifols

Takeda

The Patient Notification System was established in 1998 by the Plasma Protein Therapeutics Association (PPTA) and developed by the manufacturers of plasma-derived, and recombinant analog therapies with direct input from consumers. The system is administered by Stericycle, an independent organization specializing in pharmaceutical medications. The manufacturer notifies Stericycle of the product withdrawal or recall and Stericycle notifies the patient. Your personal information is kept confidential by Stericycle. This service is free, but you MUST sign up to receive notifications at https://www.patientnotificationsystem. org/index.asp. Or 1-888-873-2838 (1-888-Update-U). You will be asked to choose your delivery method: email, text, or phone. Email or text is highly recommended to prevent delays. Donâ&#x20AC;&#x2122;t forget to keep your information up to date! It is always important to keep detailed and accurate logs that include lot #s, product name and manufacturer.

BLOODLINES

DETERMINED TO

Read about how two patients with hemophilia A manage what’s possible through grit, support, and preparation Living with hemophilia can be a challenging journey that’s full

of limitations. However, with proper care and support, it may be possible to be physically active in ways you enjoy. Here at Takeda, we want to celebrate individuals like you who are going through challenges with bleeding disorders and making the most of them. We know it’s tough—but we also know that anything difficult helps make you who you are, by your response to it. We hope you’ll be as inspired by James’ and Pete’s stories as we are.

Pete, hemophilia A patient

These are James’ and Pete’s experiences, but your experience may be different. Any factor and physical activity regimens mentioned were developed for James and Pete only after consultation with their care teams, and may not be appropriate for all patients. Your factor regimen may be individualized after consultation with your care team.

LIFELINES for HEALTH

Fall/Winter 2020

JAMES’ STORY:

Born and raised in a rural village in the Philippines, James grew up in a

careful household. “My parents would limit my activities a lot. They loved me, but wanted to make sure I couldn’t hurt myself,” recalls James. When James did have a bleeding episode, the family would have to travel miles and miles to the nearest hospital to get him a blood transfusion. After his family moved to Los Angeles for better access to care, James learned more about hemophilia and the importance of maintaining factor levels. He began factor replacement therapy after his care team recommended a prophylaxis regimen. Learning and connecting with his hematologist, James realized his hemophilia was only a part of him, not who he was. “[He] helped me change my perception of hemophilia, my understanding of hemophilia. It gave me a little bit more confidence.”

Caring and giving

James, hemophilia A patient

Through surgeries, physical activities, and personal adventures, James found support in his wife, Carla, along with his care team. Having gone through surgery twice, he learned that preparedness is key.

“My parents would limit my activities a lot... [They] wanted to make sure I couldn’t hurt myself.”

“Before both procedures, there was a lot of discussion around how I’d be kept at a sufficient factor level. And for me, we decided to use factor prophylaxis during both surgeries, so they could continue to track my levels,” says James. James knew that Carla would be there for him through it all. “I

wanted to be active again, to go out with her like we did before the surgeries. She was a big part of my recovery.” Since recovering from his surgeries, James has been able to maintain an active lifestyle. Through his preparedness and the support from his care team, James has been able to participate in bike events, including a charity ride with his friends. To James, crossing the finish line meant more than just finishing the ride. It was also a testament to the dedication of his care team and of Carla.

BLOODLINES

PETE’S STORY:

Pete, hemophilia A patient

“For a while I thought I didn’t even have hemophilia. Like it was just something grown-ups were telling me because they didn’t want me doing stuff I wanted to do.”

LIFELINES for HEALTH

fter living nearly 30 years with hemophilia A, Pete’s management of his condition is methodical and disciplined. Raised by a pediatrician mother, he was introduced to a care team and began a prophylaxis regimen early in his life. He was one of the earliest kids treated with recombinant factor prophylaxis and was able to manage bleeds from an early age. However, even with early discipline, he found his prophylaxis regimen challenging during his teenage years.

Fall/Winter 2020

“Like a lot of kids, I got rebellious at that time in my life,” he recalls. “For a while I thought I didn’t even have hemophilia. Like it was just something grown-ups were telling me because they didn’t want me doing stuff I wanted to do.” But two weeks off his regimen and two twisted ankles later, Pete realized the true limitations caused by his hemophilia. Humbled by his injuries, he knew he had to stick to his treatment.

Through practice and prophylaxis Today, Pete stays disciplined with his routine no matter what he’s up to. He’s always packed with his travel factor kit in his car along with a trained understanding of his pharmacokinetic (PK) profile. Having a clear understanding of his factor levels from talking with his care team has in part allowed Pete to keep up his workout schedule while still being cautious. “I’m not saying I go all out. But I do feel covered, knowing my factor levels are up,” he says. With practice and discipline, Pete’s regular workouts have become just as routine as his prophylaxis regimen. James, hemophilia A patient

Read their full stories at bleedingdisorders.com

James and Pete are happy to share their personal stories and help others better understand what it’s like to live with hemophilia. Through grit, support, and preparation, both look forward to what lies ahead for them.

Finding purpose through hemophilia A Empowered by their experiences, both James and Pete find purpose in sharing their stories and mentoring others with hemophilia. James stays active in his local community, helping with his story of recovery and resilience while shedding light on undergoing surgery. Pete mentors a younger patient who he hopes can see what he’s been through and learn from Pete’s experiences growing up with hemophilia. Through their stories, James and Pete are helping to raise more awareness about hemophilia and help others like them gain confidence through proper care. Adapted from Hello Factor magazine.

Copyright © 2020 Takeda Pharmaceutical Company Limited. 300 Shire Way, Lexington, MA 02421. 1-800-828-2088. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. US-NON-2024v1.0 09/20

BLOODLINES

Making SPACE in

by Krystyn Strother

Difficult Times

s Ella Fitzgerald once sang, “into each life some rain must fall.” We can’t control the downpour and you don’t need me to tell you, or remind you, what a challenging year this has been. Before this year it already felt like some of us were barely hanging on, but the human spirit is resilient and our capacity to adapt is often beyond measure.

LIFELINES for HEALTH

Fall/Winter 2020

Firstly, I want to recognize and validate what you are feeling. The emotions you recognize as negative are completely normal. Anger, sadness, and anxiety are expected in times of uncertainty and challenge. Whatever you are feeling about your situation and the world is valid.

Now, more than ever, we need space to process, to grieve, and to be aware of our own minds, hearts, and bodies. The internet will instruct you to DIY a corner or an entire room in your home to meditate with cushions, candles, and plants to which I respond, “would that be Jimmy’s online school corner, my significant other’s makeshift office, the corner where the clean laundry piles up, my makeshift office?” You get my point. Your space to practice does not have to be an entire room or corner dedicated to fluffy pillows and the sounds of the ocean. The reality is that a room or corner space is not practical for the majority of us. When you don’t have access to a low-traffic, quiet, comfortable space in your home there are a number of ways to set yourself up for mini moments of mindfulness. 1. If space in your home is an issue, pick a windowsill or spot on a wall to create an intentional little space to settle your gaze on. An intentionally created wall space, big or small, with a little shelf to set personally meaningful things on (candle, icon, crystals, oils, etc…), and some images you like to look at hung on the wall will provide you with a little slice of reprieve during the day.

2. Make scent a part of your process. Smells you enjoy can assist in moving you into a place of relaxation. Get some lavender, burn a bit of sage or palo santo and make scent a part of your ritual for settling in, even if just for a minute or two. 3. Make it personal without succumbing to clutter. What things ground you? Is it crystals, beads, your favorite shell? Only add the things that help you connect inwardly. 4. Noise is a big one for those of us at home right now. There are so many sound distractions. If you are able, put on some headphones for a minute and listen to something soothing. There are many resources on the internet that will provide you with sounds and short guided meditations.

You do not need to spend 10 minutes here if you can’t make the time. 3 breaths looking at an image, 3 breaths with your eyes closed, light a candle, put a little essential oil on, burn something, whatever you decide to create for your moment can happen here whenever you are able throughout the day.

MIND BODY CONNECTION

5. If all else fails, you have your bed or your car to take a moment in and center. Often, when I am feeling overwhelmed with work and life, I take two minutes in bed in the morning and before going to sleep to position myself in a way that feels supportive and stretchy for my body (lots of pillows stacking) and take five to ten long breaths in and out. I think about three things I am grateful for and say them out loud if possible. Sometimes making the space we crave has to happen inwardly. It does take a little extra effort to turn in and find grounding, but that space is always there for you. Put a sticky note on the fridge or on the mirror, something to remind you to take one deep breath, maybe three, to soften your face, wiggle your shoulders, and soften the grip on what surrounds you.

Krystyn Strother is the former program director at HUSH Meditation, strategic designer/author of the HUSH meditation curriculum, is a certified meditation instructor, co-founder of NOMAD, “Adventures in Wellness”, and yoga instructor. Krystyn’s yoga classes range from Vinyasa to Yin. In addition to her regularly scheduled classes, Krystyn guest teaches at several yoga teacher training programs throughout the country, speaks at conferences on mindfulness and stress reduction practices, teaches specialized workshops, facilitates yoga + adventure retreats, and conducts continuing education classes for currently registered RYTs. Krystyn holds a certificate of completion in the Yoga of Awareness For Chronic Pain, an evidence-based program sponsored by the Department of Anesthesiology at OHSU. Read more about Krystyn at krystynstrother.com

LIFELINES for HEALTH

Fall/Winter 2020

MIND BODY CONNECTION

Photo courtesy of krystynstrother.com and Stark Photography

If you’re reading this, congratulations on taking some time and space for yourself. Take a deep breath and smile at your beautiful existence and glowing resilience.

Discover more

about IXINITY

Visit IXINITY.com

IXINITY® [coagulation factor IX (recombinant)] and any and all Medexus Pharma, Inc. brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC and Medexus Pharma, Inc. in the United States and/or other countries.

89 E. Washington Street Hanson, MA 02341-1125

CHES Mission To Inspire awareness and selfreliance for patients with chronic health conditions, their families, and their communities.

Editors in Chief Janet Brewer, M.Ed Eric Lowe

Editor Janet Brewer, M.Ed

Publication Designer Eric Lowe

Contributing Writers Janet Brewer, M.Ed Joe Gibbons Angela Lambing, MSN, ANP, GNP Eric Lowe Dr. Gary McClain, PhD Krystyn Strother Takeda Hanukkah "Rea" Watson

Stay Connected

__________________________________________________

Subscribe for Free If you have received this newsletter from another individual, and you wish to receive your own personal copy, please contact us via any of the following methods. Email: info@ches.education Office: 781.878.8561 Online: https://ches.education/communications-profile-form __________________________________________________

Online Version Giving a contribution to support the newsletter:

View this publication online for access to helpful links, cited resources, and other great add-ons at: https://ches.education/newsletter/ __________________________________________________ DEAR HEALTH CARE PROVIDERS, PLEASE CIRCULATE TO PATIENTS.