Pearson's Marrow Syndrome or KSS

[Guest guest]

Does anyone on the list have a diagnosis of Pearsons Marrow Syndrome or KSS?

If so, do you see elevations of Fatty acids through acyl carnitine tests or skin cells studies?

I'd like to talk with anyone who has some insight on this disorder. We will be testing our boys for this disorder.

Krystena s

[Guest guest]

Jim,

I cannot speak for Krystena, but would like to have some info about

Pearson's too. My daughter has sideroblastic anemia and other

issues.The closest thing they can find is pearson's but state it is

not pearson's. Very confusing for us. She is four. Any info would be

appreciated. How was she diangosed? What issues did she have? Thanks

and I am deeply sorry for your loss.

Dawn