DBA

A rare disorder

I am diagnosed with congenital aplastic
anemia or congenital pure red cell aplasia at birth.
Immediately after I was born I was rushed
to a children's Hospital in Amsterdam.
My first blood transfusion was done through my
umbilical cord. At age 3 the doctors tried Prednisone,
which almost killed me, I didn't respond at all, my blood
levels even dropped.


From birth I receive every 4-6 weeks I receive  2 or 3 packed cells.
I am also on Desferal, (an Iron chelator) I used to use it
through a port a cath and subcutaneously, but I suffer from the side effects.
It makes my very fatigue and my joints and liver hurt, I feel sick when I use it.
So that's the main reason why I don't use it as often as I should.
I already have been through the side effects of severe Iron overload.
August 1993 I was admitted to Hospital with heart and liver failure.
It almost killed me, but I survived :)

I went for a second opinion to an Academic Hospital, and there I got a Port a Cath.
The Port a Cath was a real life savior, cause this way
I could get the Desferal straight into my veins,
what is more effective and less painful than subcutaneously infusion.

Due to the effects of Iron Overload, my muscles are affected
 that's why I decided to use a wheelchair. It's less tiresome than walking,
 so it's a way to handle my lack of energy.
I don't see it as deterioration,  now I can do things that otherwise I couldn't do.
It's just another way of moving :)

Pfft, it's not easy to write this story in English,
I hope it makes sense, and that you 
folks can understand it.