Monday, October 5, 2015

AIP Research Experiences

Will you help with medical research?

                                                        Why is important?  

What does it entail? 

                                                                                       When does this research happen?

                              What Happens?

                   Take a look at a few who have expressed why research is so important!

Tracy Yelen ~ Research Experience

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)
"If you're at all interested in what they are doing to me in this Panhematin trial, I am happy to share. During the entire stay, the medical team accessed my port.  They drew all the blood they wanted without all the usual IV sticks, which is nice. Every morning after breakfast we did the infusions, which may or may not be a placebo.  Neither the nurses nor I were allowed to see what was pumping into me.  So I am blindfolded and there are sheets hung in the room to cover the medicine and tinfoil around the lines. It takes only a couple hours to complete.  I snoozed and chatted with the sweet nurse.  Outside of that, the dextrose fluids are flowing in through my port 24/7. Otherwise, it was pretty uneventful.  Why do I tell you this?  Basically, I want to remind you of how important it is to volunteer as a research patient if you ever get the opportunity. There are lots of trials that even perfectly well people can do for various different studies and various different medical reasons."
~Tracy Yelen, AIP

Steve Stevens ~ Research Experience

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

"I volunteered for the Alnylam Study about a month ago and yesterday (March 30) I went to Birmingham, Alabama to do the initial Observation Part of it. The APF set up everything to get me there and back home. Jessica handled all the travel arrangements and I can't say enough of the awesome job she did. I didn't have any layovers longer than 45 minutes. That was amazing because I have had layovers in the past last for hours. Thank You Jessica for the great itinerary and asking for any input before you booked the flight. Before I forget, the plane tickets, food, taxi costs, etc. was covered by the APF. It didn't cost me a penny. I got to meet Dr. Bloomer and Dr. Singal. They explained to me what the Study was and answered all my questions. I haven't met many doctors like them, after talking to them I could see and feel their sincerity about helping us. They are great. The Study Administrator's name is Toni and she is so fantastic. She sat with me and explained the paperwork in detail and answered any questions I had pertaining to the Study or questionnaires that I was answering. I was very impressed how professional and organized she is. She made sure everything was completed and I had enough time to get back to the airport in time for my trip home. She and the doctors are very special people. I cannot say enough about them.
I am glad I volunteered for the Study and would encourage anyone that has one of the acute porphyria's to do so also. I hope to volunteer for future research and hope others do too. You are helping yourself, your family and your future generations."
~ Steve Stevens, AIP

                          "Remember....Research is the key to your cure!"

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