My daughter Belle has Factor 9 Hemophilia B. This is extremely rare. The hemophilia gene is carried by the women and passed onto their sons, generally. More often than not, woman are considered to be symptomatic carriers, but their levels are never low enough to be considered an actual Hemophiliac. I do not have Hemophilia in my genetic composition, we went through genetic testing. Her father however has the condition. So this means she has a mutated gene. Making her even more rare. When she was born, we knew she'd at least carry the gene. As most babies do, she was clumsy & fell often; causing bruises and other "boo-boos" and would take longer than normal to heal.
2007, I'll never forget the day. We were at a family gathering, my uncle brought his ATV & 4-wheelers for everyone to play on. (We lived in the wilderness in Utah lol) My cousin, who was maybe 10 at the time, was driving very slowly. We found out Belle was on the ATV, we never let the kids ride more than one rider at a time unless it was a adult. She accidentally pressed the gas lever instead of the brake & smashed into a parked truck. Belle flew forward smashing her head into the truck. Luckily the handlebars caught her legs or she would have died.
Of course we rushed to the hospital, like any normal person would do. They attended to the most visible wound, her head. Now I won't bore you of all the details, but honestly we were in & out of the hospital for WEEKS. Her dad & I fought the doctors to test her Factor levels, but the doctors insisted that it wasn't necessary for she was a female and for her to actually have levels low enough for her healing to be effected. Finally after we noticed her leg was extremely swollen, and her head wound was not healing, we convinced them to test her levels. This is how we found out she had full-blown Factor 9 Hemophilia B Deficiency.
This condition is mostly found in boys and thus far we have not found ANY doctor that has had a female with my daughters levels. It's scary having a female with a blood condition!! (I guess I should have explained what hemophilia is & how it effect her daily life). We've been through it all. I went from not knowing a single thing about the disorder to feeling like a professional. I have been invited to a conference in Dallas, TX to speak on the behalf of women with Hemophilia B. I'm nervous & excited. This will be my first time visiting Texas, Nov 12&13th.
Anyone else want to share their story of personal genetic disabilities? @Rambo @missy @Lyxzen
