My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.
Recently encountered a 6 year old kid that has the following coagulation profile...Severe F8 deficiency, very mild F9 deficiency and a low titer F8 inhibitor...does anyone else have the same profile???
My daughter has been poorly since the beginning. She's never been to the toilet properly, picked up every illness and never slept. It took a year for me to get taken seriously by the doctors which led to a hospital referral and to be told she was severely anemic. She was very close to blood transfusion and had to undergo blood tests every couple of days. Since then she's had multiple blood tests to be told iron levels aren't perfect but She no longer needs iron supplements.… read more