Build a World-Class Team
When I was first diagnosed, I expressed my belief to a physician that I needed to seek out a specialist and he told me, "Patients diagnosed with rare diseases incorrectly feel they need to find the best of the best, but they are just acting out of fear and not being rational." He was dead wrong. Every patient deserves to be seen by the best of the best. Using your research, determine who the leader in the field is, seek them out and get an appointment. Also, if you have interest in a clinical trial, a listing of all government-sponsored trials in the U.S. can be found at www.clinicaltrials.gov.
Hope
You have to have hope. This hope doesn't come from a hole that opens up from the sky that lets the light in. Hope comes from being tough as nails, learning everything you can about your illness and never, ever accepting 'no' for an answer.
In training and racing, the biggest advantage I've given myself is to get my disease under control. I removed environmental irritants that exacerbate my illness and made smart changes to my training plan. I noticed that I needed a few days to recover from long runs/rides and high intensity workouts, so in contrast to most training plans my long runs are on Wednesday and long rides are on Saturdays. Also, I am a stickler for my diet. I follow a low-inflammatory diet, I eat something after every workout within 15 minutes and never skip meals.
Despite the lists, adhering to special diets and working with doctors, the best thing anyone competing with an illness can do is be determined to find some good in the situation.
After my story appeared on usatriathlon.org, I snagged a spot on the Kestrel Amateur Triathlon Team, and the best part has been helping people in similar situations. I've corresponded with other athletes with FMF, offered help, and introduced patients to physicians. I've done everything I can to help other athletes competing with chronic illness get a leg up and--I hope--made a difference.
