Lockz, I have a family member here in the States who has this syndrome. Please e-mail me? I might have some information that’s hard fact, not Internet-based research, that you may be interested in.
Best of luck to you.
Cartooniverse
Does it cost you any money to get a transfusion?
If the docs say you don’t need a transfusion but you tell them you’re experiencing symptoms and want one, would they give you one anyway?
Nope, doesn’t cost me any money at all, which is a good thing.
If you cut yourself does the donated blood clot normally? If you don’t produce your own blood, do you still have a blood type?
Can you stimulate red cell production by altering your diet…? I noticed you said you occasionally did produce red cells… is there a pattern to when, or does it appear to happen randomly?
My blood clots normally, which is a good thing. Wouldn’t want to lose any of that precious stuff. I’m not sure about the red blood cell production, I (and my docs) have no idea what causes me to start producing. As for the blood type, I think that’s determined by my body but I have no idea. I’ve never taken a biology course.
About how many transfusion reactions (allergic reaction to the blood) have you had?
And have do you have any unexpected antibodies from all the transfusions you’ve had? I’d be surprised if you didn’t consdering you’ve been getting blood since childhood