This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.com .
Wednesday, April 26, 2017
My Journey with VP by Sean Albright
My porphyria story is a long and emotional
one... I grew up having chest pain, vomiting and skin issues. nobody knew what
was going on not even myself. I moved to Melbourne Florida when I was 16 and
first heard about porphyria from the TV show House. My doctor's had tested for
everything else so when I asked to be tested for porphyria they were fine with
it. It came back with a VP diagnosis. I almost passed away due to wrong
treatment for it. I now have my porphyria fairly in control and use my experience
with porphyria and love of Motorsports to raise awareness for porphyria via racing.
I have met some really cool people who have been here for support. a player
for my local minor league hockey team has convinced me to start playing hockey.
I know a few people who have porphyria and play hockey due to it being
indoors. I hope one day that those with porphyria are able to live
more enjoyable lives
It took over 17 years for a proper diagnosis. I
have received Panhematin at least once a month if not more. The American
Porphyria Foundation has saved my life by letting me know the treatment I was
getting was actually making me sicker and could kill me, the APF (American
Porphyria Foundation) was also very helpful in me being able to find a new
doctor who knew about porphyria and the proper treatment. When Sean is feeling well he enjoys raising awareness for the APF by iracing just take a look at his car.
You for sharing a glimpse of what’s it’s like to go through with VP.
For more information on Variegate Porphyria please visit porphyriafoundation.org #NPAW2017 "Remember...Research is the key to your Cure!"