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.