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Hemophilia and Inherited Bleeding Disorders

What to do?

08/22/2007

Question:

I am absolutely lost My daughter is 15 years old, with general good health. She had her first period 3.5 years ago, and from the very beginning, I noticed that something was wrong: the amount of blood was enormous!! Until then, I didn`t notice any abnormal bleeding. My husband and I have good health, without bleeding problems

Our family doctor run some tests and the only abnormal result was her bleeding time (12 minutes). She was referred to a children hematology service. They ran dozens of blood tests (Proteins, Von Wildebrand, factors, etc). All the results seem normal, however, her bleeding time remains between 10-12 minutes Since last year the amount of blood of her periods seems more "controlled", however, each injury bleeds a lot. But other than this, my daughter has a normal life. But suddenly, even without injuries or excessive bleeding, she started to feel tired. Her ferritin level was 35. She took an iron supplement, the ferritin went to 52. After 6 month she was told to stop with the supplement and now the ferritin level is again in 35

Therefore, we don`t have a diagnostic or a solution. We were told that the tiredness may be or may be not related with the ferritin level. The only answer we have from the doctors is "she has a medical condition and she should live with this".

Are there other diagnostic resources? Can this problem be a consequence of other disorder (meaning liver, or kidneys or...) Should we look for more answers with other medical specialties? Thank you in advance

Answer:

There are some inherited bleeding disorders that can be difficult to diagnose, but can cause problems like those you are describing.  They are usually mild conditions that are easy to control once the proper diagnosis is made.

I would suggest that you look for a doctor who specializes in seeing many patients with coagulation disorders.  This type of doctor is called a hematologist or coagulationist.  One way to find a doctor who is familiar with these conditions is to call a federally funded Hemophilia Treatment Center and ask for a referral.  You can find the Hemophilia Treatment Center nearest to you on the National Hemophilia Foundation website at www.hemophilia.org.  Click on the tab called "Researchers and Healthcare Providers".  Then click on "Comprehensive Medical Care".

For more information:

Go to the Hemophilia and Inherited Bleeding Disorders health topic, where you can:

Response by:

Madeline Heffner, BSN, RN
Nurse Coord.
College of Medicine
University of Cincinnati