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.