Saturday, May 31, 2014
Amanda Boston ~ Panhematin Story
Type of Porphyria:
Variegate Porphyria (VP)
I had the most amazing privilege participating in the “7203: A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin® in the treatment of acute attacks of porphyria” research study. I met two amazing Doctors that I had only spoken with through email and telephone: Dr. Karl Anderson and Dr. Akshata Moghe.
The research was performed in Galveston, TX at the UTMB. I was flown into Houston and transported to Galveston. I stayed at the Harbor Hotel until I developed symptoms of an attack, which occurred two days after I arrived, as my attacks are very frequent. For the research, I was blindfolded, the drapes were drawn and foil wrap was put on the cords, so that I wouldn't know if I were getting a placebo or Panhematin™, but my body knows the difference. I was started on the research, but my headaches and abdominal pain was only getting worse. I was about to start an attack. So the rescue treatment, which is Panhematin™, was brought in and administered to me. I felt better the next day. I stand by Panhematin™ , and I truly believe that it is an effective treatment for Porphyria.
My whole reason for doing this research was to help others and to show that Panhematin does work. When I first got to the UTMB for the research, I found out that I was the first research patient on this particular study. That is a wonderful privilege. I feel a great sense of accomplishment by participating in the Panhematin research study. I feel that I really accomplished my goal, because I was given the opportunity to help others. I thank the APF for helping me to make my goal a reality. Dr. Anderson is the one who developed and oversaw the research. He is an amazing Doctor and Porphyria expert. He knew exactly what I needed from the moment I walked into the research clinic. I've never met a Doctor that was so educated on Porphyria and so devoted to the research and helping one’s suffering from Porphyria. Also, he is the nicest person you will ever meet. If anyone with Porphyria has the chance and is thinking about being on a research study, I would suggest that you take that opportunity. It is the greatest privilege you will ever have.
Amanda Boston All of our thoughts and prayers go out to you and your family during your Loss Amanda...
"Remember....Research is the key to your cure!"
Porphyria Post ...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...
Happy Thanksgiving everyone 2017