2023Education Programs

Virtual programming

We'd like to thank all who attended our LadyBugs spring webinar series concentrating on the needs of women with bleeding disorders.

Miss the live webinars?

Watch them on YouTube: https://www.youtube.com/@ches1

Comprehensive Health Education Services has been serving the needs of those with rare bleeding conditions since 2009.

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

To receive info on additional upcoming programs and webinars visit: https://ches.education/communications-profile-form

Live

Programs

July 28-30, 2023

Westin Atlanta Airport Hotel

June 23-26, 2023

Camp Zeke - Lakewood, PA

September 10-14, 2023

Camp Collins - Gresham, OR

November 3-5, 2023

Tampa, FL

What else is likely to occur during the visit?

A physical examination, of course, since there are conditions other than a bleeding disorder which can cause heavy menstrual bleeding.

Hypothyroidism (low thyroid hormone production) is a well-established cause of heavy periods. Polycystic ovary syndrome (PCOS) is another.

Mothers of teens, and teens as well, may be concerned that an internal GYN examination is automatically indicated. It most definitely is not! The decision to perform an internal exam rest with the GYN, but our adolescent GYN at our girls only clinic (we call it the Cycle Clinic) performs internal exams, only if she is concerned that there could be a structural abnormality. The history, regular physical, and lab results are enough for her to recommend period management – if need be, she will order an abdominal ultrasound to check for the thickness of the uterine lining and the presence and/or absence of ovarian cysts.

1. CBC (complete blood count): This lets us know if you are anemic (low red blood cell count or low hemoglobin), and if you are making enough platelets which are the cells important for clot formation. This test also provides the total white blood cell count and what is called a differential. There are many types of white blood cells, and, basically, they are all involved in preventing or fighting infection. The differential provides a breakdown of the different types present in your blood, and may provide clues as to a potential viral or bacterial infection, a possible autoimmune process, etc.

2. Factor levels: Depending on your situation, family history, etc., these tests measure the amounts and/or function of some or all the clotting factors.

3. Platelet-specific studies: This test will be able to analyze how well your platelets actually work in terms of stickiness: THIS TEST MAY NEED TO BE PREARRANGED WITH THE SPECIAL COAGULATION LABORATORY, AND MAY NOT BE ABLE TO BE DONE ON YOUR FIRST VISIT DAY.

This test will provide information as to how well your platelets work to help form a clot and can be diagnostic for conditions such as Bernard-Soulier Syndrome or Glanzmann’s thrombasthenia.

4. Iron profile: This panel specifically measures how much iron is in your system overall. The serum iron is a measure of the actual circulating iron in your blood; the ferritin reflects how much iron is stored in your body for use.

5. Rule out pregnancy: Either bloodwork or urine

6. Blood type and crossmatch: If hemoglobin is <7g/d or a woman is experiencing symptoms of anemia such as excess fatigue, dizziness, shortness of breath, fainting… a transfusion may be necessary.

7. PT, aPTT: These are basic screening tests of the clotting process, measuring the length of time it takes for your blood to form a clot in the test tube. A low factor level may result in a prolonged PT (usually factor 7 issues) or PTT (think vWD, hemophilia, factor 11 deficiency) or prolongation of both tests (factors I (fibrinogen), II, V, X.)

8. Von Willebrand Disease panel: (VWF activity, VWF antigen, VWF Ristocetin Cofactor, Factor VIII activity, and VWF multimers) Workup will likely need to be repeated outside of the acute bleeding phase even when normal. Since vWD is the most common bleeding disorder worldwide, affecting men and women, unless your history suggests otherwise, this is often included in a basic workup.

9. Factor VII activity level: Although classified as a rare bleeding disorder, many providers – our program included - are identifying more and more women with low factor 7 and heavy menstrual bleeding. Discuss the need for this test with your provider.

10. TSH and thyroid hormone, particularly if cycles are irregular

11. If obese or with hirsutism and irregular cycles check: Hgb A1C, free/total testosterone, DHEAS, prolactin level (PCOS is a whole other article, best left to the endocrinologists or GYNs).

12. If sexually active, urine tests for gonorrhea or chlamydia infections.

Depending on your unique situation, other tests may be ordered which would be discussed at the time of your visit. A general evaluation which can be done easily and by any provider would likely include a CBC, differential, reticulocyte count (young red blood cells), platelet count, PT, aPTT, and iron studies.

How does a woman become iron deficient?

It’s a simple balance between blood (iron) loss and iron intake (usually from food.)

During a “normal” period, a woman may lose up to 35mg of iron each month. If you are experiencing heavy menstrual bleeding, the monthly iron loss is even greater. A serving of chicken only has about 2 mg of iron; beef has a little bit more. Dark chocolate actually has 7 mg of iron in a 3-ounce serving, but, sadly, we can’t exist on dark chocolate alone! Since only about 40% of the iron we eat is absorbed it is easy to see how quickly a woman with heavy menstrual bleeding can become iron deficient, even if she is eating an iron-rich supportive diet.

There are 3 stages in the development of iron deficiency anemia: in the first stage, the iron stores (ferritin) are depleted, as a person loses iron (blood), through menstrual bleeding but does not take in enough iron-rich foods to compensate for the loss. The body uses the stored iron to maintain the red cell level, or Hemoglobin. The serum iron is often still normal, as the stored iron is put to work. In the second stage the normal process of making red blood cells is impaired, and, in the third stage there is insufficient iron to produce red blood cells. At this stage the hemoglobin has fallen, the red blood cells that are produced are smaller than normal because there isn’t enough iron, and anemia has occurred. As the red blood cell count continues to drop because the blood loss exceeds the intake, a person is likely to become symptomatic - pale, dizzy, fainting, rapid heart rate, etc.

Your provider may recommend oral iron supplements, intravenous iron infusions, or even a blood transfusion if your hemoglobin level has fallen to less than 7g (11g is generally normal for women) or you are very symptomatic. For women with heavy menstrual bleeding, identifying the cause and managing the blood loss is critical. A GYN provider can offer many options for management which do not need to rely on traditional birth control pills. One non-hormonal intervention which is used frequently in teens and adult women, is Tranexamic Acid (marketed under the brand name Lysteda®). This is a medication which stabilizes (or prevents the breakdown of) the clots which must form in the uterine lining to ultimately stop the period. It is effective in improving menstrual flow in women with heavy periods of any cause! Talk to your health care provider to see if this is right for you/your teen.

This article is intended to provide women with the basic tools to establish a meaningful conversation with their health care providers. A visit to a Hemophilia Treatment Center - even one which does not yet have a dedicated women’s program – can be invaluable. Eliminating or establishing a bleeding disorder as a cause for heavy menstrual bleeding will allow you and your providers to move forward.

If your HTC does not offer a women’s program, ask for a referral to a GYN at the same institution. Often there is easier communication between subspecialists in the same space. If there is no HTC in your area, check out CDC. gov to identify the nearest HTC – reach out to the Nurse Coordinator to discuss the possibility of, at the least, a remote visit to begin a relationship which will be beneficial to you.

The role of the HTC for women with bleeding disorders is expanding rapidly. Even if the workup does not establish a bleeding diagnosis, that information will help your GYN or primary providers to explore other diagnoses with, hopefully, a manageable resolution for heavy menstrual bleeding and/or iron deficiency anemia.

Hemophilia (& Bleeding Disorders) Treatment Centers Directory https://dbdgateway.cdc.gov/HTCDirSearch.aspx

Dr. Joanna Davis received her undergraduate degree from Barnard College of Columbia University and her MD from the Albert Einstein College of Medicine. After completing a residency in Pediatrics at Montefiore Hospital and Jackson Memorial Hospital, and a Fellowship in Pediatric Hematology/Oncology at the University of Miami, Dr. Davis joined the faculty at UM. She developed the Pediatric HTC in 1987 and has committed both the Adult and Pediatric programs to outreach and education. In addition, Dr. Davis authored a series of bilingual children's booklets on bleeding disorders, as well as other books and scientific articles, received several unrestricted educational grants, and raised bleeding disorder awareness to over 3,000 HCP’s. Identifying and treating women with bleeding disorders is a particular focus of her practice.