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#1
Sat Apr 7, 2018, 12:35 AM
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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
Tue Apr 10, 2018, 02:14 PM
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Can the PNH expert help since GPI is associated with chronic hemolytic anemia?
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#3
Wed Apr 11, 2018, 12:00 AM
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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
Mon Apr 16, 2018, 09:21 AM
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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
Fri Apr 20, 2018, 02:20 AM
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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!
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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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#6
Fri Apr 20, 2018, 02:30 AM
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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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