I’m now loving every minute of my life

My Mom had told me that when I was 13 months old I would start screaming uncontrollably every time she took me to the beach while living………….IN BERMUDA !!! 

She couldn’t hold or bathe me and it broke her heart.😢 

Fast forward 12 years and a zillion doctors later (including Walter Reid Army Hospital) and still no answers until one day, when I was 13, my Mom took me to see a new dermatologist who had arrived at Vandenberg Air Force Base. He listened to me and my brother’s story, took one look at our hands and said “I know exactly what this is”. A couple of 💩 samples later we received a diagnosis of EPP. 

Great! Now, what can we do to cure this.??? 😝😝😝

Fast forward 43 years and with the help of our true angel on earth, Kristen Wheeden at United Porphyria Association I was able to begin treatment with the Scennesse implant. Wow!! What a life changer. However, 3 years in and my Dr. would no longer provide my treatment due to health insurance nightmares for her and her billing department.

Bummer, but I was thankful for the time I had with the implant. 

So, I text my old friend Kristen to let her know. She then tells me about a trial with a drug called Bitopertin, and opened the doors allowing my brother and I in. 

Wow!!!!! What a wonderful experience it has been, twice the impact Scenesse was and now I’m LOVING EVERY MINUTE OF MY LIFE!!!