Participant 1

Why did you enroll? I feel like it is so important to know as much as I can about this disease, for myself and for others. I feel lucky to be involved.  


What did the study involve?  It is Monday thru Friday, you stay in the hospital the entire time. The first day you have an MRI, echocardiogram and Ekg . Every morning at 7 they draw blood, then you have 1/2 hour to shower and dress for the day, at 7:30 there is another blood draw. Either Tues or Wed (can't remember, it has been almost a year since my first visit) you have a 6 minute walk and a couple of other physical tests, then more blood draws. The last couple of days, there is not much going on besides the blood draws.


How would you characterize your experience in the study?  Dr. Zimmerberg, the Principle investigator and Irina the Clinical coordinator are so smart and helpful.  The researchers and staff are very nice. The nurses at the NIH are awesome! I will have to say, though, my next vacation will be somewhere more tropical and include mai tais and pina coladas!