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.
Sean~Thank 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!"




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