Glucose Phosphate Isomerase disease/dificency
 

Hello my friend has a son who has this. They are having trouble finding any specialist or answers or any Drs in North America.
A disorder that causes hemolytic crisis.
He has had his spleen removed already

https://ghr.nlm.nih.gov/condition/gl...ase-deficiency

Anyone know anything about this?

Can the PNH expert help since GPI is associated with chronic hemolytic anemia?

Leigh I was curious about the similarities of the two diseases.
Who should I contact? They are feeling quite hopeless

Hi Heather,

If you are in Houston, contact Dr. Lawrence Rice at Houston Methodist, LRICE@houstonmethodist.org or 713-441-1111.

Are you coming to the AAMDSIF Houston Patient and Family conference in Saturday, April 21, 2048? Dr. Lawrence will be there. https://aamdsif.salsalabs.org/houston2018/index.html

Leigh thank you so much :) Dr Rice was/ is my husbands Dr. he is incredible!
Unfortunately their insurance isn’t one he takes and they were super bummed about that. but I’ll tell them he will be at the conference !!!
We are actually traveling to Hawaii so we will miss this year but would love to attend next year
Thank you!

I will tell them maybe they could make an appointment and try to submit to ins for reimbursement