F.U.SE.
September 2015 Issue 8 Volume I Health and Awareness
Sickle Cell Natural Healing
Issue
Testimonies of our Sickle Cell Warriors!
WDC Radio promotes The awareness of Sickle Cell!
Get Educated On Sickle Cell A.S.A.P.
Model, Gianna “Model Marie” Young is not only a model, but a Sickle Cell Warrior fighting with Thyroids as well!
Interview on page 50-57
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Inspirational Quote “It does not matter how Slowly you go as long as you do not stop”
~Confucius
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In This Issue History of Sickle Cell
Whatz
Disease and the
Da Count!
Symptoms
The Natural
Personal
Healing of
Testimonies by Sickle Cell
Sickle Cell
Warriors
Disease Let’s Learn About Sickle Cell A.S.A.P.!!!!!
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In Every Issue Inspirational
Motivational
Quote
Poem
Word Scrambler
Relax Your Mind
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CEO AND SICKLE CELL WARRIOR
Author, Poet, Blogger, Writer, Motivator and Now CEO of her own Magazine battles Sickle Cell and still keeps focus on dreams!
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God has created everyone in His own image. Well He created me and gave me Sickle Cell Disease when I was one year old in 1986. My parents wasn’t really educated by it and they didn’t have the proper screening test at birth to test infants for Sickle Cell Disease. Although I didn’t suffer very many crisis like some other people, I suffered enough. My first crisis was called an aplastic crisis. During that time I was living in South Carolina at Shaw AFB. The doctors told my parents that they had to go to Augusta, GA so I could get tested. The doctors gave me a blood transfusion which I was hospitalized for about a week. After that, I was a normal and happy baby again. Years went past without any crisis or pain, then in the year of 1998, I experienced another crisis. On the way back from my grandad’s funeral, I was having some pain and feeling shortness of breath. As a person living with sickle cell disease, you never know when pain or a crisis will hit your body and when it does, you have to find something to relieve the pain which is the worst! I was experiencing back pain one night which just came about and I woke up my parents to let them know. That next day I went to the hospital and was hospitalized. The doctors had issues putting an IV in my arms because I had tiny veins. I couldn’t take them sticking me over and over again. My dad just told them to just get it right. When you are very young and you have a bunch of doctors trying to stick you, it can be very annoying, but I was able to deal with the pain and the needles. Laying on my back in the hospital bed was the worst because that was where the pain was. Even I tried laying on my side and all I could do was cry. But I was given some morphine to calm the pain down. I was diagnosed with an acute chest syndrome which is a very serious crisis. If you have it too many times in your adult years, you can die from it. When you are having shortness of breath in your chest, it can be a scary thing. Back then, I wasn’t really thinking about dying or being scared. I just wanted the pain to go away so I can be normal again and play like I always did. That was my first crisis. My second crisis was the following year in 1999 which was the most serious crisis of all because I was in ICU. The doctors wasn’t sure that I was going to make it! What parent want to see their young child die of a serious chronic illness? But angels came by my bedside and saved me because God knew I had a purpose! That was the last crisis that I have experienced for a very long time. As an adult, I never experienced any pain. I just continued to go to my daily routine doctor appointments every six months to make sure I was still in good health. The only types of medicine that I take for my Sickle Cell is
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Folic Acid and Hydroxyurea. I started taking Folic Acid when I was one and Hydroxyurea when I was twelve. I heard that it doesn’t work for everyone, but thankfully it has worked for me. December 22, 2014, I experienced some back pain and chest pains early that morning. I got up and got dressed for work like any other day. But when I got to work about 2 hours into my shift, I felt dizzy and didn’t feel right so I called my parents and told them what was going on. My grandmother picked me up and took me to the ER. I wasn’t admitted or anything. The doctors just ran four tests to see what was causing the pain and what it was. Of course I knew it was probably another crisis. This crisis wasn’t as severe as the other crisis I’ve had when I was younger, but still I had the worst pain! I could barely stood up straight or walk! Prior to that, I’ve experienced minor pain in my side and my chest, but I didn’t go to the ER for it. I am just thankful because it could have been worst! I hear about other people living with Sickle Cell Disease that has had hip replacements when they were young, hospitalized every week or walking with a cane. So I don’t complain if I’m experiencing some pain. So far this year I haven’t experienced any pain but I like I mentioned, you never know when you will have a crisis because it can attack your body just like that! I try to exercise twice a week if I can and try to keep myself hydrated drinking water, 100% juice and Gatorade. It’s very important for people living with Sickle Cell to keep themselves hydrated at all times. Now I am trying to live my dreams to the fullest as the CEO and Founder of this magazine, starting my own small business online and trying to create an empowerment movement to help others! I still maintain my writing skills and plan to publish my fourth book in 2016 or 2017. I’m doing what God has called me do and I won’t allow my illness or anything else to come between that. We have to learn how to stay strong and believe that everything in the end will be okay!
“I can do all things through Christ that Strengthens Me!” ~Philippians 4:13
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LETTER FROM CEO Greetings everyone! This is a very special issue because September is Sickle Cell Awareness Month. A lot of people aren’t aware of this disease and me being a person living with Sickle Cell as well, I feel that it is very important to promote it and make everyone aware of it. I got a chance to interview people that are promoting this disease where they live it. Plus several sickle cell warriors share their personal stories living with the disease itself. A lot of people aren’t aware of what Sickle Cell in their communities so it is very important that we are aware and educated. Just about every state has an association for Sickle Cell. You can simply google it and call the office to see what you can do within the association. Volunteers makes a big difference these days because community service has a big impact all over. Donating your time is very valuable so when you do get a chance to check out the Sickle Cell Association in your are and ask about volunteer opportunities. So I hope you enjoy this special issue of F.U.S.E. magazine that is dedicated to Sickle Cell Awareness month the whole month of September. And remember to educate yourself about this disease and help support the cause as we still continue to find a cure.
Patrice Rivers
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FUSE MOVEMENT!
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CONNECT WITH FUSE! F.U.S.E. which stands for Fire Uniting Strength of Empowerment started out as a newsletter in December 2014 and then expanded into a magazine in April 2015. The purpose of F.U.S.E. is to promote positivity, empowerment, motivation, encouragement and inspiration to those all over.
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lilwomanonamission1@yah oo.com
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What is Sickle Cell Disease? Sickle Cell Disease is an inherited blood disorder. People with SCD have abnormal hemoglobin called “hemoglobin S” in their red blood cells. Since this disease is inherited, it is passed by genes from parents to their children. A lot of people think that SCD is contagious, but its not. You cannot “catch” SCD disease from anyone who has it like those with a cold or an infection. One is born with this disease. People who have SCD inherit two hemoglobin genes; one from each parent. The most severe type of sickle cell disease is Sickle Cell Anemia. A normal person’s red blood cells are round and shaped like a disc or a “doughnut” whereas a person with SCD; their red blood cells are s “sickle or banana” shape. Sickle-shaped cells are not flexible when moving through the blood vessels.
Normal shaped red Blood cells vs. SickleShaped cells in a person with SCD
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This causes a blockage that slows or stop the flow of blood from moving. When this happens, oxygen isn’t reaching the desired tissues in the body which can cause pain or a “crisis” Pain can occur without any warning and majority of the time, people with SCD are admitted to the hospital for days, weeks or months. The “sickling” in the body can cause poor oxygen delivery as well as organ damage. SCD can harm a person’s spleen, brain, eyes, lungs, liver, heart, kidneys, some genital parts (men) joints, bones or skin. SCD is a life-long illness. The severity of this disease varies from person to person.
CURES FOR SICKLE CELL DISEASE There isn’t a universal cure however there are transplants for some SC patients. One must have a close donor who can be a potential match. These transplants can be risky at times, so medications are another option to reduce the pain and pain crisis. About 1 in 13 African American babies are born with Sickle Cell Trait while 1 in every 365 black children are born with SCD. African-Americans aren’t the only race who have SCD. Descents from Middle Eastern, Europe, Asia and Hispanics as well as descents of India can have the disease as well. Approximately 100,000 Americans have SCD.
SIGNS AND SYMPTOMS SCD is present at birth, but sometimes an infant can experience problems at 5 to 6 months. Early symptoms with SCD are: painful swelling of the hands and feet (dactylitis), fatigue, a yellowish color of the skin (jaundice)
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Or whites of the eyes (icteris). The most common complication of SCD is acute pain crisis. Pain episodes does not have any warning. They can come at anytime. These type of pain episodes are more painful than surgery or any other regular pain. People living with SCD describe the pain as sharp, throbbing, intense and stabbing. The pain often occurs in either the lower back, legs, arms, abdomen or chest. A crisis can occur by the illness, temperature changes, stress, dehydration or being at high altitudes. Other major complications are infections, kidney problems, acute chest syndrome, brain complications, eye problems, heart disease, pulmonary hypertension, gallstones, priapism, liver and joint complications, leg ulcers, mental health, pregnancy, etc.
HOW SICKLE CELL IS DIAGNOSED
SCD is diagnosed with screening tests. You can easily go to a clinic to get tested. They also have newborn screening. Every state in the United Sates, District of DC and the US territories is required to screen every baby for SCD. They also have prenatal screening where doctors can diagnose a baby with SCD before it is born.
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My Name is Patrice Rivers Born in Sumter, South Carolina Made with Determination and Creativity I am Ivan and Melody’s Daughter #BornNMade
www.bornandmade.com
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GET YOUR COPY TODAY TO RESPRESENT SICKLE CELL!
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Whatz Da Count!
Farron Dozier, Volunteer Patient Advocate for Sickle Cell Trait (SCT) and Rhabdomyolysis, champions prevention about the Sickle Cell Trait and for a community of individuals and families affected by the condition and disorder. Creator and Co Facilitator of Sickle Cell Traits HUMSV-281l-01-4527 taught at San Bernardino Valley Community College started 21 & completed on 28 February 2015. 1 credit / 16hr Certificate Course. Also the creator and Host of Trench Talk. Trench Talk is platform for our Veteran Soldiers of all branches of services (men and women) to come and share their most memorable Military stories, experiences and history. Also be a location where veterans services, programs and resources are shared and available for our Service Members from "Then and Now"
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He works with national services, faith and community-based organizations to create a lasting positive impact and dispel myths around the condition affecting millions of men, woman and children around the globe. Dozier is the visionary of the I AM WDC Achievement Award; recognition of youth and adults who overcome obstacles, adversities and challenges as a result of the sickle cell trait and sickle cell disease. He is a collaborator on Public Service Announcements raising awareness about the issue of sickle cell disease and the sickle cell trait empowering listeners in health awareness and healthy life choices. SFC Farron Dozier is an affiliate member of the SCD Soldier Network and Moretta Solution Team Network, and actively gives back to military families, communities and at-risk youth in America. His most memorable award of his career is the Military Outstanding Volunteerism Service Medal for his Sickle Cell Trait Advocacy work recognized by his peers and his Battalion Commander.
Farron Dozier SFC, Retired, U.S. Army Executive Producer / Broadcaster WDC Radio Show Email: farron@latalklive.com www.WDConSCT.org Cell: 323.215.5384
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WHAT’Z DA COUNT?!!!
Thank you for taking this opportunity to interview with F.U.S.E. Magazine for Sickle Cell Awareness Month! I see you are doing a lot of things with promoting the awareness of Sickle Cell, Sickle Cell Trait and other diseases. What was the vision you had in mind when you first started the show? The vision of the show was to create a platform for Community to Break the Silence and to share their stories "Living with Sickle Cell". and now called "Aspects of Sickle Cell" For me people with Sickle Cell Trait and Disease have something to say. Tell everyone that’s not familiar with your show and organization what the purpose and mission is? The Organization was created to re-educate humanity about Sickle Cell Trait. How did you come up with the concept of both? It really is who I am being. The concept was based off my life experience and my hobbies having a blog tall radio show during my depression called WDC DA MOVEMENT www.blogtalkradio.com/wdcdamovement I know the importance of Sickle Cell Trait and Thalassemia are important, but what about the most “severe” form of Sickle Cell? SS disease ?
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Your question has to be addressed in two parts. The reason I speak about the Traits are because the traits are what creates the different types of Sickle Cell Disorders. Yes knowing your Sickle Cell Trait status and having people aware of the Sickle Cell Trait leaves out a group of people who are impacted just the same. Part two is saying that SS is the more severe case is really on to me a strong opinion in the world. These are individual disorders. How Sickle Cell trait does affects your routine life? For me I have secondary health issues today. Do you experience similar symptoms of Sickle Cell Disease? All I can tell you is there has been pain in my left arm since age 5 and I was told the pain was from growing pain. As I have described my pain to others with the disorder; the pain sensation is similar to what I feel. When did you air your first show? My first show was on BlogTalk on 14 September 2010. What was your reaction when you found out you had Sickle Cell Trait when you was in the military? When I found out I was age 29 and had been serving for 10yrs. At the time I did really know much about it. Only that my cousin Nigel has the Disorder. How did it change your life? Experiencing Sickle Cell Trait Exertion during my Military career has alter the future I thought I had control over. It has allowed me to Be Farron in a humanistic type of way and create this advocate for sickle cell trait . Full of pain and suffering yet understanding and compassionate for myself and life/people around me. Tell us a little bit about how you were diagnosed with Sickle Cell Trait? I see you have some of the story on the website, but for those who are reading, tell us briefly.
Interview continued on page 58-59
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DON’T SWEAT THE SMALL STUFF! By: Elder Brian Taylor My name is Brian, and I've lived with Sickle Cell Anemia for 44 years. To some people, the idea of being 44 is no big deal. To someone like me, it is an amazing accomplishment, to say the least. When you've lived the life I've lived, and seen your own father die of the same disease at the age of 37, that wreaks havoc on your body day in and day out you develop an appreciation for these "little things". Richard Carlson wrote a book called Don't Sweat the Small Stuff. In it, he says that it's all small stuff, but to someone like me, nothing seems so small when you're chronically ill. I've faced many things such as leg ulcers; hands and feet that swell three times the normal size, which felt tighter than the skin of a conga drum and more numb than you can imagine feeling when hypothermia threatens you in the winter. I've faced exploratory heart surgery and even had my gallbladder removed. Yet, if you asked me why I still smile, I'd tell you because I'm still alive and I yet still have much to accomplish in my life. It's true that I've faced many setbacks educationally and in my career because of the numerous crises that I've dealt with. I however look to those challenges as merely a test that pushed me to seek new ways to thrive; like a seed that must first crack its outer shell and then fight its way up through the earth to find the way to the sky and the light of the sun. Over the years, I've been a peer tutor and camp counselor to others like me. I've had the privilege to speak to first year medical students, so that they can see what people like me look like when we're not sick and laying on an emergency room gurney. As a child, I would fear everything, worry about everything, and see everything as a big thing. What helped me to put things in perspective was coming into a true knowledge and relationship that there is a God who cares about me and for me, even when it doesn't make sense that I yet live with Sickle Cell, while scriptures throughout the bible point to countless people who are healed of cancers, leprosies, palsies, blindness, deafness, mute and even death.
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Through my faith I've found a purpose beyond my pain; a passion beyond my wounds. I've found life that extends beyond my birth date and eventual date that I no longer walk this earth. I'm always looking for ways to share the good news that God is good, God is love, and God cares. I'm always seeking ways to encourage others in my good times and bad. I do it because I love it, because I love people, and because it's just one more way to keep in mind that we can't sweat small stuff, even when in our own eyes it doesn't appear to be small stuff.
Connect with Brian Taylor! apreachaskid.wordpress.com www.linkedin.com/in/brianktaylor www.facebook.com/APreachasKid Twitter: @apreachaskid
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“I AM A SICKLE CELL WARRIOR!” PERSONAL STORIES AND TESTIMONIES FROM PEOPLE LIVING WITH SICKLE CELL DISEASE
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Kenthany “KAngel� Murphy One thing I love about my life: Every day is a new day to start fresh. Yesterday wasn't good but it's okay because today will be better. Misc. Blurbs: Father of one. Active volunteer in the community from working in the food pantry to teaching and mentoring the youth from helping them study for their homework to teaching them how to play drums. I'm not trying to make anyone feel my story is worse than your story because the truth is, we've all been through our own separate things with Sickle Cell Anemia. My story in a nutshell is that I was born with what I found out is the type that a lot of my fellow warriors was born with and that's type SS. The doctor's told my mom that I wouldn't live past 7 years of age. I had my first stroke when I was 5 and again when I was 7. I remember being in the hospital at 7 years old asking my mom if I really had to die at 7 years old? On my 8th birthday, my mom threw me one of my biggest birthday parties but I knew that all my days weren't going to be so happy. I admit that I've gone through things kids shouldn't go through ,but I survived whatever life threw at me. Over the years, I've grown into a "superman" of sorts because I had been counted out since the day I was born and always could find the bright side of a bad situation. I want kids to be able to say that Sickle Cell doesn't have me. I don't necessarily encourage them to always try to exceed their limits or expectations because I know I pushed myself to limit that is unimaginable for some with Type SS Sickle Cell. I played sports and felt bad I couldn't let my limitations stop me because of what I've been through is hard to imagine for most "normal" people.
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I've survived strokes, a mild heart attack and the list goes on. Just like any other fellow warrior suffering with SCA, I'm misunderstood, I'm not always in the best of moods because people have tried to put us down mentally and emotionally about how "weak" we are. One of my biggest inspiration is my "big sister" Tameeka Mitchell. She does so much for Sickle Cell advocacy. She's a big reason like I love doing the same thing wherever I go. But long story short, don't let the pressure of life get you down. We're fighters. We live to fight and we fight to win.
Chicago, Illinois; Age 28
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Delva Renee Walker
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My personal mission in life is to inspire people with sickle cell and to open up about sickle cell and continue spreading the awareness of sickle cell through my writing. I want to build a support base for people with sickle cell so they can support others and help them deal with their condition better or give them a chance to meet and talk to other people who live with sickle cell just like themselves. I think too many people are not getting the kind of support that they need for this condition, so they are struggling and trying to cope with the illness and their fears of being judged. I never opened up about mines because I didn't know how people would accept me. Hi my name is Delva Walker and I want to tell you about my story living with Sickle Cell. On November 26, 1979; at six months old I was told that I was very ill and was told that they had to put me in a tub of ice to bring my temperature down. That’s when I came to find out that I had sickle cell. They didn't know how to diagnose it at that time, so they told my mom that I have sickle cell trait. I walked around for many years as a youngster trying to figure out why I was always sick. No matter what state I moved to as a youngster it was always “oh she just has sickle cell trait,� so as time passed on , I was pregnant with my first child at 15. As I was sitting in the doctors office, I wasn't feeling good at all and it was so bad that I was balled up on the floor. The doctor asked me what was wrong and I told him that I was in so much pain and I didn't know what was going on so I told him I have sickle cell trait. The doctor took a blood test and it came to find out that I had Sickle Cell Disease at the age of 15. As a youngster, I continued to have flare-ups from Sickle Cell. When I became an adult, I decided to go off to college. I was in so much pain my first semester trying to be a cheerleader and trying to run for student government that it was plenty of times I had to leave school and when I left I left for weeks at a time, I came right back on track. This is my story and I want to tell people to never give up and never let someone tell you that you don't have an illness and you know you really do.
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No matter how much pain I'm in, I am still blessed. I have sickle cell anemia, but sickle cell anemia does not have me..
“I have Sickle Cell. Sickle Cell don’t have me!”
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Be Strong Warriors
To all the Sickle Cell warriors continue to be strong! Knowing that your pain isn’t going to last for very long Breathe through all your pain and regain your strength You got this! You can get through this You were born strong to win this race The deadly disease that lives inside us The enemy that we soon must face While laying in the hospital bed moaning from all the pain The shortness of breath that always puts us to shame Can we just get a moment away from this disease that’s trying to get the best of me? A moment of peace just to relax our mind and do what we love to do most Our brothers and our sisters living with the same disease from coast to coast We were born warriors To fight this enemy that continues to live inside of me Continue to be strong and continue to fight To become pain-free and to not let this disease be in sight By Patrice Rivers
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SICKLE CELL NATURAL HEALING
Tamika Moseley grew up in Shreveport, Louisiana. At the age of 18 she joined the United States Army Reserve and later received an honorable discharge from the military. She received a Bachelor of Science degree in Human Relations and Business from Amberton University in Garland, Texas. She is the project manager for Healing Blends Global, a company whose focus is to improve the quality of health and life for individuals, families, and communities around the globe. Tamika's purpose in life is to be of service to others. She is a member of Greenville Avenue Church of Christ in Richardson, Texas, where she serves on the Benevolence and Missionary teams. Because her son has sickle cell disease, she has a huge passion to help others in this fight. She wants to share her amazing story with other parents and all who suffer from this disease. Tamika's current focus is teaming up with Dr. Charlie Ware and aiding the sickle cell battle in Africa, where the disease is so prominent. Their main goal is to provide education, guidance and useful information on the importance of natural herbs and how they can help sustain our health while living with sickle cell disease. Tamika, her husband Rodney, and their three beautiful children live in Dallas, TX.
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Tamika Talks about Natural Healing What gave you the idea to write your book? TM: I wrote my book because my son has sickle cell disease and he suffered many crisis and blood transfusions at a very young age and was hospitalized on a regular basis. I quickly realized that I needed to change from what I was doing or the hospital would be our second home. I started researching natural herbs to help manage sickle cell and started giving to my son on a daily basis. Three years passed and he did not have any crisis. During this time, I had connected with hundreds of people around the world and would listen to their stories and how their kids were suffering from sickle cell disease. Once I saw how well my son was doing, I was so excited and I had to write my book and share with people all over the world and to be an inspiration to millions who are suffering and who are looking for other alternative ways to manage sickle cell. Since your book, have you done any traveling to different places to talk about Natural Healing and about your son’s experience living with Sickle Cell Disease? TM: Yes, I've traveled many places speaking and raising awareness for sickle cell disease. Some of the places I've traveled are Sunrise, Fl - Baltimore, MD Shreveport, LA - Kingston, Jamaica - Opelousas, LA - Lake Charles, LA - Desoto, TX - Minneapolis, MN - Alexandria, LA - was also featured on KeyeTV "We Are Austin" in Austin, TX. Now I’ve been reading your blog on blog spot about Even Flo. Tell me some more about that? Who is the creator of it? TM: Even Flo is a safe, effective and fast acting natural analgesic compounded with the highest quality herbal extracts and nutraceuticals.
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It helps replenish blood flow, combats deficiencies such as anemia and alleviates symptoms from lack of proper blood flow, including dizziness and shortness of breath. It also reduces body pain by containing Ferulic Acid, which prevents spasming. Even Flo also treats chronic pain through the antiinflammatory and microcirculation properties of several herbs found in the formula. Dr Charlie Ware is the creator of Even Flo. Dr Ware AP, DOM, LLC is a Acupuncturist in Hollywood, FL. How has this helped your son Aiden? When was the last time he had a crisis? TM: Even Flo has helped Aiden beyond belief! He has not had a crisis in 5 years and he's a happy, energetic, and vibrant kid who plays sports and enjoys life to the fullest. Aiden takes Even Flo every day and he never misses a day of taking. What are the statistics of Even Flo users? Is the feedback of those positive ones? Any negative feedback about this product? TM: The feedback has been truly amazing, we have positive testimonials from people all over the world sent to us daily as well as positive video testimonials as I don't know the exact number but hundreds of people are using Even Flo world wide people who lives in Africa, Algeria, Sweden, well. We've had one person mention that their child had diarrhea and this was due to her child should have been taking 1 capsule for her age, and they were giving 2 capsules, once they started the child on the correct dose, the diarrhea went away. I see that you have built a powerful and nourishing network to educate people about Sickle Cell Disease and Even Flo. Has this made you a stronger advocate and person?
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“ He has not had a crisis in 5 years and he's a happy, energetic, and vibrant kid who plays sports and enjoys life to the fullest. Aiden takes Even Flo every day and he never misses a day of taking.�
TM: This has definitely made me more stronger and more of an advocate to help others. People are losing loved ones daily from this debilitating disease and I feel the need to educate the world and let people know that there are other alternatives to treat sickle cell. It's very important to me because at one time, my child was suffering and I did not have a clue of what to do for him. Now I feel it's my duty and responsible to raise awareness and educate people on natural alternatives. What steps would you recommend to a young adult/child living with SCD when taking Even Flo for the first time? TM: I would recommend anyone living with sickle cell to give it a try. It's a natural supplement and it's unique because it not only is a natural pain reliever but it also aids in the production and formation of red blood cells. Take daily and do not miss a day, it will only make the body stronger and healthier because the plants inside it will nourish the cells and tissues. I always recommend along with taking Even Flo, to eat healthy such as majority of plant based foods, lots of fruits and vegetables and lean meats. No sugary drinks, no processed foods. Where can patients and families find this natural healing; Even Flo from? Is it available in all states and countries? TM: Yes Even Flo is available world wide, anyone in the world can order online at: www.healingblendsglobal.net
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What projects are you currently working on? (If any) TM: I am currently working on our distributing of Even Flo to various African countries. In Africa, they have little to no help and they don't access to natural stores like in the United States. I have some events next month during Sickle Cell Awareness month. On September 12th I will be presenting information on Even Flo and healthy living and eating at the 5K & Sickle Cell Family Day in Dallas, TX. September 19th I will be speaking in Lafayette, LA at the Sickle Cell conference. How does it make you feel that you are advocating for your son? And to help others around you? TM: It makes me feel like I am living my passion in life. My passion is to be of service to others as well as doing missionary work. My purpose is to help as many people as I possibly can while I have breath in my body. To see mothers with kids who has sickle cell as well as adults who once suffered severe crisis and since taken Even Flo they have not experienced the numerous of crisis they once suffered and many of them have not had any more crisis since they started Even Flo. When I hear this news, it means the world to me, I'm filled with an unbelievable joy that I cannot explain. I will continue to be an advocate and continue to raise awareness for sickle cell and let people know there are alternative methods they can take to live healthier, normal, happy and pain free lives. How can your readers connect with you? TM: Readers can connect with me through my website: www.ssnaturalhealing.com or email me at info@ssnaturalhealing.com Is there anything you would like to add? TM: I would like for people to know that I've lived both sides of this horrible disease. I've watched my son suffer many crisis and I've almost lost my life after pregnancy due to having sickle cell trait. I've even experienced painful sickle cell crisis myself. People should keep in mind, that having continuous crisis over and over again can result in organ damage, strokes, chronic pain and even death. I would encourage everyone to try Even Flo, if what you are currently doing is not working, then why not try it. I want to see people well and I know we can beat this disease and it starts with taking that step, changing our mindset of what we've been taught to believe in and take a different path in life. We must do what others won't do, our willingness to do so may mean the difference between life and death. Let's educate ourselves, do our research and meet each challenge with the determination that there is always a solution which may not be what is "normally" accepted.
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Everything on earth has a purpose, every disease an herb to heal it and every person a mission.
Thank you for interviewing with F.U.S.E.
Magazine!
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Photography by Patrice N. Rivers
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Say Hello to the President of A.S.A.P., Kemba Goiser! Author, actress and Sickle Cell Anemia advocate are only a few things that describe Kemba Olabisi Gosier. A native of Miami, FL, Kemba is the proud mother of two phenomenal daughters; one of her daughters suffers with Sickle Cell Anemia and is the main reason Kemba is determined to help find a cure for this depilating silent disease. According to Kemba,” The Sickle Cell community lacks so much on many levels. Almost every Sickle Cell patient I have encountered has a horror story about how they have been discriminated against, misunderstood, or labeled as a “drug addict.” Because of the mistreatment, Kemba was lead to spearhead Advancing Sickle Cell Advocacy Project, Inc. (ASAP), an organization focused on advocating on behalf of Sickle Cell Anemia patients and educating the community on the disease. When Kemba is not serving in her capacity as President of ASAP, she is busy with her first love, acting. Kemba has debuted in several theatrical performances and independent films. Kemba believes in giving back to her community and serves as the Vice President of The Iron Barr Group, a theatrical performing arts group for youth, where Kemba writes plays and give theatrical direction. Kemba also wrote a children’s book, Shanika Finally Understands, that tells the story of a young girl growing up in an urban community, and Kemba plans to write a sequel.
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President of A.S.A.P. Advancing Sickle Cell Advocacy Project, Kemba Olabisi Gosier
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Let’s Learn About Sickle Cell A.S.A.P!!! Advancing Sickle cell Advocacy Project, Inc., (ASAP) is a nonprofit organization comprised of Sickle Cell survivors, caregivers and those affected by Sickle Cell Disease and Sickle Cell trait. Our Vice President is a living miracle, defying the odds of life expectancy ( 42 years for males and 48 years for females) at age 66. ASAP was formed as a result of being tired of the stigma associated with people living with (SCD) and the non-professional treatment patients have received, not only here in South Florida, but around the United States and the world. As a young mother, I was devastated to learn my daughter was born with Sickle Cell Anemia. Since birth she has had multiple hospitalizations, blood transfusions, two major surgeries, including a total hip replacement, in which she almost lost her life. She lives each day with chronic pain. There still remains a lack of compassion, knowledge and understanding within the medical community and general population about (SCD). (SCD) is the most common genetic blood disorder in the United States. It’s been over 100 years since the discovery of Sickle Cell Anemia and we have not come very far in terms of education, research, treatment, awareness or a cure. ASAP’s mission is to educate and advocate on behalf of sickle cell survivors in Dade and Broward counties, their families as well as educate the general public. Advancing Sickle Advocacy Project, Inc. (ASAP) This year we are holding our annual “Be Informed” awareness forum, which will feature leading Dr.’s in the fields of Hematology, research and pain management.
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We serve as a voice for those who have had no voice and have been marginalized. Too many survivors have horror stories about how they were treated by medical professionals. (SCD) is thought of as a “black disease” and survivors are often labeled as “drug seekers”. There has been no scientific evidence to sup-
port this assertion. In actuality, (SCD) affects people of ancestry from Africa, South or Central America, Caribbean Islands, India, Saudi Arabia, Turkey, Greece and Italy. Currently, there are an estimated 100,000 people with (SCD) in the U.S. and millions are affected globally.
Our goal is to become a leader in advocating for better protocols, raising awareness, developing a wide range of support, educational and networking services designed to improve the quality of life for people living with (SCD).
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SICKLE CELL WORD SCRAMBLER
GHNOEBOI ISCIRS UAEFIG SNDROSEIEP YTNHAOEIRD PHLIOSAT NIPA DNELEE CNAIDJUE TMANIOCIED ALTNTPARNS
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Photography by Patrice N. Rivers
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Relax Your Mind! Have you ever been so busy that you didn’t know what to do? Maybe you have a lot of goals and dreams on your mind that you can’t even focus on what you are suppose to be doing. This is normal and it does happen. Sometimes we just need to recharge our thoughts and relax our mind so that we can think clearly. Trying to do fifty things at once isn’t going to solve anything but drain us mentally and stress us out! Sometimes we just have to pause and stop what we are doing and just take deep breaths to catch up with our thoughts. We can’t continue to go on and go on daily with our day to day routines without actually sitting down and taking a break. Taking deep breaths so that our blood will flow smoothly to our brain. God knows I can’t do everything I would love to do everyday because I would get tired. There are times that I want to write a new blog post for one of my websites, but physically I am tired, so I just take a break and relax for the remainder of the night. Instead of thinking about everything that we have to do for the day, relax a little bit and do little by little. A lot of people don’t know how to relax so they find themselves tensed and stressed by the end of the day. Kick back and listen to some music or watch TV or if you are on the job, maybe playing a computer game or go outside to catch some fresh air. Whatever you do, pace yourself and take one moment at a time.
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Date Night Divas On the Run!
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Date Night Divas is a Fort Worth, Texas based full service event planning company founded by Caneel Denton in January 2015. After a co-worker, Tim Hudson desperately wanted to plan a magical anniversary weekend for his wife and had no idea what to do, the foundation for the company had been laid. After thinking it over Caneel recruited her best friend Kina Knox and cousin Tiffany Cook and thus the Diva journey began. We came up with an idea to help make event planning easier. With work, school, home life and social activities we all get extra busy but we still want to make time for our special events . With our help you can maintain your daily schedule and still create an amazing lifetime memory . “At Date Night Divas, we offer services including date nights, birthday parties, anniversary celebrations, baby showers and getaways. We help plan your event from start to finish! All you have to do is provide us with details and we will take care of the rest. So relax and allow us to turn your special event into a lifetime memory!�
Business Partners Caneel Denton: Founder and CEO Kina Knox: CFO Tiffany Cook: Director of Marketing Social Media Info Website: www.datenightdivas.com Facebook: DateNight Divas Instagram: datenightdivas Twitter: @datenightdivas
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The Makers of Date Night Divas!
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Sickle Cell Warrior. Model. Thyroids Warrior. A Story behind this Beauty! Gianna “Model Marie” Young shares her story living with Sickle Cell Disease and Thyroids.
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Model Marie Tells it All! When you did first discover you had sickle cell and thyroids? MM: I discovered I had sickle cell because my blood count was really low and hemoglobin level. When I was younger I had really bad pains and that’s when the doctor discovered I had sickle cell . As far as thyroid disease I was gaining weight rapidly and had strep throat a lot. Also I was growing grey hair when I was 18 . How old were you when you found you were deaf? MM:When I found out I was deaf I was about 5 years old. What impact does being deaf affects your everyday routine? MM: Being deaf effects my everyday routine because I'm very anxious when I cant hear. Sometimes people become impatient with me and also people don't understand and tend to get upset . I try my best to educate people . Within the last 2 years, how many times were you hospitalized for pain? MM: I have been hospitalized more than 8 times for sure. I cant even count the times anymore. Do you find yourself getting frustrated and depressed because of pain episodes?
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“Life
is beauti-
ful. Whatever you do make the best of it” ~Gianna Young
MM: Yes I do have depression and I try not to let it get to me, but there are days where I had to cancel plans or shoots. Some people don't understand or they think I'm faking my pain . How do you balance having sickle cell and thyroids? Do you think one is worse than the other? MM:I think sickle cell is the worse, but thyroid can be painful. I have a hard time breathing sometimes with sickle cell and when my thyroids acts up, my neck swells and becomes painful where I’m unable to breath. It is very difficult living with both sickle cell and thyroid cause it causes extra pain. It’s great to see you doing the one thing you love… modeling! How long have you done that and how did you discover that you wanted to become a model? MM: I have been modeling since age 9. I found it really comfortable being in front of the camera and since then I knew modeling would be something I truly want .
Sickle Cell Warrior
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How has sickle cell and thyroids affected your modeling career in the last few years? MM:? It has affected my modeling because I try to push my self. There was a point in my life that I haven't done anything for 4 months . I used to do photo shoots almost everyday and runway shows every weekend . I always wondered about this. Are you able to read lips because you aren’t able to hear? How do you normally communicate with others? MM: I communicate by voice . I have something that is called a cochular implant and it helps me hear. If my battery dies or if my device isn't working, I usually read lips or request an interpreter for sign language . What is a normal day for you like with pain and without pain? MM: A day for me without pain is me in front of camera or show and a day for me with pain is in my bed ,doctor or hospital . Where do you see yourself five years from now? MM:In 5 years I see myself as a supermodel. What is the one thing you would love to accomplish in life? MM: I would love to accomplish helping out others and giving them motivation to models and to set up a organization for people who suffer from low self esteem . As for the Sickle Cell organization, open doors to sickle cell and deaf models to bring the best service so that we can raise awareness to help companies who need models understand our condition. That why no one will be inpatient or feel judged because they have to cancel a shoot due to pain.
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Do you have any goals or plans for the near future? MM:My only goal besides modeling would be to live life happy.
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Whatz Da Count Interview...Cont.. From Page 21 I had taken a another physical since my initial one when I first joined. The base clinic called me in a panic to to come back for some information. as I shared above at age 29 is when they told me I was a Trait carrier. What do you want to accomplish with your organization and radio show? My Organization will and has accomplished my mission which is bringing awareness, education and prevention information and available testing for people to know or not if they carry anyou inherited genes. Who motivates you the most when you are spreading the awareness of health disorders? My mentor Phyllis Thomas died in 2012. She trained and was given a vision that included me which was Judges Chapter 4; she is still my drive and inspiration because she believed in me and saw that the only way to prevent a child from being born with Sickle Cell disorder is education about the trait. What motivates you to keep your organization and radio show going? Honestly the community does. Some days I question God and myself of why? Like no one cares about sickle cell but when I go into social media and those groups and see the comments of people who are having pain or issues with care or wanting to take their own life it touches my soul to do this work. How did you come up with the name “Whatz Da Count?� I always wondered that .
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In 1997 God told me to use that phrase for a later date. Being a Basketball player I would say WHAT'S THE COUNT? and no matter where I was even in another country someone would always say the score of the game. So God gave me WHATZ DA COUNT with that spelling to give it some flavor and at the same time he gave me the question marks as it is asking a question. How do you remain positive when you are going through pain? I don't. I still battle and suffer at times. Sometimes I don't get out of bed because my secondary health issues and my mental state still remind me of what has happened to me. Usually I have to find someone to talk to or my daughter who also has the trait is my other driver. There are a lot of people living with SCD who are sometimes negative towards pain. What advice would you give them to be more positive? What I share is that there is a reality of living with sickle cell disorder. There is pain and crisis and medications and transfusions as treatment also we can't let this gene define us a people. As a prevention advocate going to get treatment before the pain is to severe to handle. Think preventive care. Once on the "battlefield" I call it or know as the Hospital is an opportunity to share who they are with those Doctors and Nurses and others in that environment. That is how we can stay positive in the mist of pain. Do you ever take your show on the road? Like traveling to different states talking about your organization and radio show? Not the way you word it. I have done live interviews on other station on terrestrial and internet Radio shows. However I have it already ready to execute one. For those who want to find out more about your radio show and organization, how can they contact you? My Website is www.WDConSCT.org My Facebook is www.facebook.com/ WDCRadio My Twitter and Instagram: @iamwdc My email is wdc@whatzdacount.com Cellphone 323.215.5384
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SPECIAL FEATURE: An Endometriosis Survivor Who Conquers Her Dreams And Still Remains Strong! We acquire the strength we have overcome. ~Ralph Waldo Emerson
May 18, 2001 at the tender age of twenty-five I was diagnosed with endometriosis through a laparoscopic procedure. Before diagnosis, I endured chronic menstrual pains causing discomfort to every part of my body since the age of eleven. There would be times I couldn’t get out of bed or complete the smallest tasks. My doctor at the time advised me it was normal to experience these kinds of cramps. I began trying multiple birth control pills/shots in hopes of alleviating my pain month to month. Unfortunately, these only resulted in weight gain and damage [to] my hair. I tried multiple cycles of Lupron injections which hurt my joints, put me in a medical menopausal state, [caused] hair loss, mood swings, and countless other side effects. Five months after my initial diagnosis, I was back into the operating room removing a cyst from my ovaries. In August 2002 and 2003, I had laparoscopies to remove adhesions and endometrial implants, during [the] time [when] all the organs in my belly were stuck to one another and had to be put back in place.
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I AM A SISTER GIRL!
In November 2004, a functionality test of my fallopian tubes revealed they were blocked, and I may never conceive children again. I wanted another child so badly, but my body just wasn’t cooperating with my plans. I was hospitalized in December 2004 twice before having a cyst and endometrial implants removed from my small bowel, intestines, ovaries and fallopian tubes. In 2005, I had a pelvic vein embolization due to chronic pelvic pain and enlarged veins. March 8, 2006, I had my uterus removed due to extensive damaged caused by endometrial implants, adnomyosis, endometriomas (Chocolate cyst), and extensive adhesions. On February 4, 2009, I had emergency surgery to remove my right ovary due to a 17 cm endometrioma (chocolate cysts) and endometrial implants which had damaged my right fallopian tube beyond repair.
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In six different occasions I had anywhere from 1180cc-750cc of bloody or brown coffee-like fluid drained from my pelvic. I remember laying there trying to take my mind [go] somewhere else as the doctor stuck a huge needle into my lower abdomen. I felt like the life was being sucked out of me. September of 2009 I was back in the hospital removing my left ovary and fallopian tube. I remained in chronic pain despite all the toxins and damaged organs that were removed. I was referred to an Oncologist Ob-Gyn due to the extent of my disease. Just when I thought I would have some pain relief, I was told my estrogen levels were high for a woman who should be in menopause. I then found out I had a left ovarian remnant that had cysts inside of it that was causing me daily pain. I went a year with pain before it got so severe that my body began swelling up, which made it difficult to walk sometimes. I recall going to Griffin Hospital one Sunday with excruciating pain on my right side. I had ultrasounds and cat-scans and the results were mind boggling to the doctors to say the least. They questioned me about previous ovary removal surgeries. I remember the doctor saying what they saw looked like an ovary, and I should follow up with my doctor. I left the hospital still in pain and more confused than ever. At this point I wondered what else could possibly go wrong. I was scheduled to have surgery on October 25, 2010 to remove the left ovarian remnant. It took me months to feel any relief; my life was consumed with pain meds, no female organs and a tremendous sense of emptiness. Hot flashes, night sweats, mood swings, sleeplessness, [and] pure depression was now a part of my daily existence. November 30, 2012 I had another surgery to remove my cervix due to extensive pain on a daily basis.
STORY CONTINUED ON PAGE 64
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ANSWERS TO THE WORD SCRAMBLER FROM PAGE 44! HEMOGLOBIN CRISIS FATIQUE DEPRESSION DEHYDRATION HOSPITAL PAIN NEEDLE JAUNDICE MEDICATION TRANSPLANT
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“This is just the beginning of my next chapter and I couldn’t do it alone. I’ve met some amazing women along the way and it’s so refreshing talking to someone who can truly relate to this thing called ENDOMETRIOSIS “ My doctor explained that he had to “Clean the spider webs” before he could actually proceed to remove anything. My insides had a tug-of-war with themselves is [how it] was explained to me. Once my doctor was able to put my insides into their rightful places and remove all the adhesions, he was able to proceed with removal of my cervix. I was discharged after a four day stay at Yale’s Smillow Cancer Center. This particular surgery left me unable to walk for months and unable to remember my entire hospital visit. I was discharged to a relative’s home for around the clock care. I was given a nurse, CNA, physical therapist, walker, cane, and a portable toilet. The muscles in my legs were weakened due to the position of my body during the extended time frame of the surgery. I also have Rheumatoid Arthritis which also flared up as a result of the surgery. My recovery process was slow but once again, I made it through. My last surgery was to remove a tumor that was trapped in one of my many scars. The best part about that surgery was the TUMMY TUCK I had to have (No more bullet holes) To date I’m battling lupus, endometriosis, osteoarthritis, rheumatoid arthritis, fibromyalgia, depression, anxiety, mild disk bulging, and spinal stenosis with a smile. I’m on countless medications to manage my different illnesses, but I have faith that one day they will all be a thing of the past. I have a GREAT support system of family and friends by my side. I’ve had times where I couldn’t walk, give myself a bath, or even wipe myself. My mother, husband at the time and son along with other awesome family and friends picked me up and gave me faith that tomorrow would always be better. Although there isn’t a CURE and I still have chronic pain, I will remain hopeful and positive.
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This is just the beginning of my next chapter and I couldn’t do it alone. I’ve met some amazing women along the way and it’s so refreshing talking to someone who can truly relate to this thing called ENDOMETRIOSIS. Many people ask me why I never shared my story before and my answer is God placed this in my path now. In the years to come as I continue to build my Legacy, I see great things. One of my goals is to sit down with Ms. O (OPRAH). I Plan on traveling the world spreading awareness of this Endometriosis while building phenomenal Sisterhoods. I see our name and mission being seeing and heard WORLDWIDE. Raising millions &millions of dollars to help women cover treatments and surgical procedures. Providing care for women at home (cooking, cleaning, companionship, etc.)
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FOLLOW THE FUSE MOVEMENT FOR MOTIVATING AND EMPOWERING ARTICLES! WWW.FUSEMOVEMENT.ORG @afusemovement14
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THE P413 FOUNDATION FOR SICKLE CELL DISEASE
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LET’S FIND A CURE FOR SICKLE CELL!
The P413 Representing Illinois The P413 Foundation for Sickle Cell is a husband and wife founded group from Gurnee, IL in efforts to educate and assist in research for Sickle Cell. Nakia Asbury, is a 40yr old Sickle Cell warrior. Along her journey of which Doctors stated she wouldn't live to see 20yrs old, she has encountered many obstacles. Nakia has survived 2 hip replacements among her many surgeries, as well has birthed 5 children in which she was told she could not have. As a sickle cell patient, once diagnosed, the are given a list of "don'ts" or "can not's" which often places worry on the children and parents. Although she is hospitalized often in battle with these disease, she continues to fight for strength and advocate to the community and youth to give hope that all things are possible, as our non-profit organization name derives from Philippians 4:13. In losing her older brother to sickle cell nearly 2 years ago, that was motivation for P413 to work within the community, and speak with hospitals, doctors and schools so that the awareness of sickle cell is brought to the forefront as any other illness. As we visit the hospitals either for meeting or treatment, you'd be surprised at how many nurses or staff are unaware on how to treat the disease. To date, our organization has received support from Volkswagen, has been on nationally syndicated Soul 106.3 radio, In The Flow TV located in Kenosha, WI, as well as other media outlets in the news, magazines and hosted several community events to educate and bring awareness. Thanks! Lewis W. Asbury Sr.
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FOUNDERS OF THE P413 FOUNDATION FOR SICKLE CELL DISEASE
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