My porphyria blog: The Race to the Cure

The Race to the Cure

A cure to aip has been something I've hoped for, prayed for, and dreamed of, and I'm sure many others have prayed for it. Many with aip suffer everyday with life-threatening symptoms such as chronic pain, paralysis, seizures and ileus. I've asked myself Could a cure happen in my lifetime, or in time for me to have a normal life? The answers are coming for us all and sooner than I could have believed possible. Right now as your reading this, they are actively doing gene therapy trials for aip in Spain on severely ill aip patients. The first aip patient to ever recieve gene therapy! In North America they are going in a different direction, they have been developing this new drug ALN-AS1 by Alnylam pharmecueticals, that is suppose to suppress PBG's and prevent aip attacks. Both of these treatments show a lot of promise, and if clinical trials go well they should be available in five years or maybe even sooner! I want to thank these brave aip study patients who are risking a lot so that we all can get better. I'm praying that all goes smoothly with these clinical trials, a lot of us are counting on it. Thank you Doctors! http://www.bionity.com/en/news/141406/first-acute-intermittent-porphyria-patient-treated-with-a-gene-therapy-product.html

http://www.alnylam.com/Programs-and-Pipeline/Alnylam-5x15/Porphyria.php

5 comments:

GSmith said...

Yay, what wonderful, promising news!

Penelope said...

I know, right! Thanks Gina!

norah Gee said...

Hello , I am an AIP patient diagnosed less than a year back. I have read so articles that liver transplant is the cure for people with severe symptoms. I hope this helps and good luck

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