I now enjoy being an outdoor grandma without worry of pain

 It is with gratitude we insist the FDA Approve Bitopertin as soon as possible!

I am 65 years old and have had EPP since birth.  Without treatment my EPP prodrome symptoms start under five minutes. If I get a full-blown reaction from being in light, I have to spend days in complete darkness. This affects every aspect of life from what nursing jobs I worked,  to how I watched my children's sports from a distance in the woods instead of on the field. Upon leaving the darkness of my house, it is necessary to wear a hat, bandanna, leather gloves, denim jacket, jeans, socks, and shoes. This includes the summertime. This is to prevent the searing flame burning sensation on my hands, face, and feet.

I have been on Bitopertin under Disc Medicine’s Phase lll Apollo trial and am now staying on the drug under the Helios extension because it has worked so effectively for me! 

I have been out for hours and hours at a time! No mask! No Denim! No gloves! I now enjoy gardening, biking, kayaking, hiking, skiing, and being an outdoor grandma without worry of the pain. The simple pleasures of life like sitting in the sun or eating outside, are now possible without risking pain and injury!

Bitopertin is an especially unique treatment as it lowers PPIX in our blood as was demonstrated in the clinical trials. This has life-saving potential, helping keep our livers safer from failure!

FDA needs to approve this miraculous drug as soon as possible!