Hello everyone,
First of all, I'm Dutch so English is not my primairy language. Hope you understand my posting.... :-)
Here's another HBH-patient. Well, it's not me but our daughter.
She's now almost 8 years old (in 2 months) and we adopted her when she was 10 months old.
She's originally from Southern-China, an area where thalassemia is known.
We live in the Netherlands (Europe) and there are not much people/children with HBH in our country. The children who have Thal. are thal. minor or beta thal.
The first medical reports from China (age 0-6 months) didn't indicate that she was a
"thallasemie-girl", but after we got home she was diagnosed with an anaemia that was first treated with iron.
The anaemia didn't get better, hb didn't get above 6. MCV, MCH and RDW were also not in a normal range.
So we have insisted to examine for thallasemia. With a DNA-test it was confirmed that she has HBH, at that time she was 1,5 years old.
Now, she's almost 8 and did get a transfusion in December 2004 (age 5) and 2006 (age 7). Both after having an infection.
She didn't recovered fast enough and her body (blood) couldn't handle it anymore.
Her "normal" Hb is between 5.3 and 5.6. She got the transfusion when she had an Hb of 4.8.
Normally she's stable at her normal Hb (see above). Sure, she doesn't have that much energy that children of her age have. But her friends keep that in mind and try to keep up with her. For her it's not (yet?) a problem. There are no other fysical problems, her spleen is a little bit to big but the hemotologist said not to worry.
She goes every 6 months for her check-up to the hemotologist. The last time she didn't like that anymore (my blood must be normal, I don't want to go...)
And takes folic acid 0,5 mg every day.
It is notable, however, that when she's in colder water (swimmingpool, swimming-course) her energy falls down. Because of that it took her 2,5 years to get her swimming-diploma. She gets that cold that she almost can move.
She doesn't have any problems with heat.
Maybe for CLS it's good to know that children with HBH could live a normal live!
I read that the Hb of your daughter was "growing" and thats good news. Hope that she will be continue that progress.
Well, that's our story. Hope to see more "HBH- patients" here.
Christine (Netherlands)