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  #1  
Old Fri Apr 6, 2018, 11:35 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
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?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #2  
Old Tue Apr 10, 2018, 01:14 PM
Leigh Clark Leigh Clark is offline
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Can the PNH expert help since GPI is associated with chronic hemolytic anemia?
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  #3  
Old Tue Apr 10, 2018, 11:00 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Leigh I was curious about the similarities of the two diseases.
Who should I contact? They are feeling quite hopeless
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #4  
Old Mon Apr 16, 2018, 08:21 AM
Leigh Clark Leigh Clark is offline
AAMDSIF Patient Educator
 
Join Date: Jun 2007
Posts: 19
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
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  #5  
Old Fri Apr 20, 2018, 01:20 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Leigh thank you so much Dr Rice was/ is my husbands Dr. he is incredible!
Unfortunately their insurance isnít one he takes and they were super bummed about that. but Iíll 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!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
Reply With Quote
  #6  
Old Fri Apr 20, 2018, 01:30 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
I will tell them maybe they could make an appointment and try to submit to ins for reimbursement
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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