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Infant with PHA1

AubiChase Message
6 Apr 2011, 01:37 AM

I just joined the site and was hoping to get more information on the prognosis and longterm treatment of my son. He is currently 10 months old and was clinically diagnosed with PHA at 5 weeks. Our journey has been quite a roller coaster and we feel so lonely in his treatment because his disorder is so rare. I would love to talk to others who are in our situation. Please feel free to contact me through email if you prefer at Thank you for any informaion you have to offer on PHA!
mima76 Message
12 Jul 2016, 10:35 PM

Dear sir, I see that none respond to your call. As you were alone than now that is my problem. My son has PHA 1 and he is now 2 years old. We run thru hell these last 2 years and as we live in Serbia we dont have too much doctors interested and paid for research on any rare diseases. So I'm hoping for at least words of consolation. I hope your son is well now :)