Sharing my Story-Bleeding Disorders

I know that health is not a typical topic on this blog, but I am adding it today.  Saturday morning I awoke early to head a little north to Greensboro, NC for the NC Hemophilia Conference with a friend.  Saturday’s conference was my first experience at a hemophilia conference-actually, it was my first experience participating in anything to do with hemophilia.  I had no expectations.

The main speaker for the conference happened to be Jeanne White-Ginder.  My friend gasped with anticipation when she heard the speaker’s name.  I did not know the name.  Man, did I get the surprise of the year.  Jeanne White-Ginder is the mother of Ryan White, a boy with hemophilia who contracted HIV through a transfusion and who became an amazing advocate for people with HIV and AIDS.  His mother shared their journey together and his story.

I wanted to attend the conference mainly to participate in the SOAR (Support Outreach Advocacy Resources for Women and Girls with Bleeding Disorders) program.  From the program, I realized that most women are in their 30’s before they are diagnosed with a bleeding disorder, unless they have a parent with a known bleeding disorder.  Most women do not think that they may have a bleeding disorder until they begin to hear stories.  Sharing stories helps spread the word.  So here is my story:

One day I accompanied my friend to her hematology appointment.  While in the office, the physician asked me what my story was.  I was shocked by his comment.  He immediately commented on how anemic I looked.  After  many blood tests and going through my history, I found out that I have a platelet disorder that prevents me from clotting.  How did I make it 32 years without knowing that I had a bleeding disorder?  Disorganized and disjointed health care? Not knowing normal bleeding?  Lack of communication among women?

So what in my history were the red flags?

  • Nose bleeds as a child.  Not just any nose bleeds, but one to two hour long nos bleeds that went through boxes of tissues and required cauterization to stop.
  • Heavy menstrual cycles.  As a young teen and young woman, my cycle would last for almost 2 weeks at a time and were far from normal.
  • Bruising.  I have bruises ALL-THE-TIME.
  • Long healing time.  I take a long time to heal from sprains, strains, surgeries, etc.
  • Heavy bleeding during surgeries.  I have had several surgeries.  All had bleeding complications or prolonged healing (one surgery required drains for 3 days-my drains stayed for 3 weeks).
  • Heavy bleeding after births which eventually required an endometrial ablation.
  • Anemia and VERY LOW ferritin levels.
  • Bleeding gums when I floss and when I go to the dentist.

I am forever thankful to my friend for taking me to her appointment.  Because of her, my children will have a different experience. We can be proactive for all that life brings.  Why will I start sharing my story?  I hope to help someone as my friend helped me.

There are many resources out there on hemophilia and bleeding disorders.  Personally, I keep in touch through the Hemophilia of North Carolina Website and the SOAR website.

6 thoughts on “Sharing my Story-Bleeding Disorders

  1. CHS has an insurance named after Ryan White. It’s for people with HIV/AIDS who need help affording medical care. I saw it in the ER frequently.  At first I had no idea what it was till a co worker told me. It’s a sliding scale insurance card. 

    Sent from my Verizon Wireless 4G LTE smartphone

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  2. THAT is an amazing story! Were your CBCs always a little off? Your hbg/hct? Your platelets? Had you ever had a ferritin checked before? Just curious! You know I never want to be the one (if I ever practice again—or even when I get shown friends’ and family memebers’ labs…) to miss things!


    • CBCs were normal. hbg/hct were normal. Platelets were normal (I have them, they just don’t work. They clot VERY, VERY slowly, so basically I ooze a lot of plasma). The hematologist was the first to check my ferritin. It was at 11. At the time, I was being watched by a neurologist who was thinking that I may have MS (memory loss, clonus-like spasm in my legs, fatigue, etc). I had an iron infusion (which I had a BAD allergic reaction to which is not uncommon) and all of my symptoms disappeared. It changed my life!! Since then, I have had one more infusion and I did well with it (although we premedicated like crazy). My hemoglobin is ok as long as my ferritin is not too crazy low. The only tests that were off were my Collagen/EPI, PTT and Platelet function test. It was easy to miss without the history to go with it.


      • I know!! In face, I have a good friend who has a pretty similar history who I am trying to get to a hem/oc. She also has a daughter who has the nose bleeds. One of the big parts of the SOAR initiative is to speak with doctors and NPs to educate them on some of the key questions to ask. Another random thought-the platelet function test is very time sensitive. It must be processes fairly quickly after the sample is taken (I went through several bleeding diagnoses before I got a final one from a research hospital).


      • The platelet function test: I remember ordering it several times. The labs (pathologists) would always call to tell us (I was a resident so it would have been called to me as the ordering MD but I’d have to discuss it with my staff MD.) they didn’t do that test anymore. SIGH. After discussion, we’d get it done finally. Medicine is so frustrating and as I follow through my husband, getting more so every single day. Sorry for the blue tone. The positive note is that with awareness and knowledge, things work better. 🙂

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