Many people have walked 3,000 miles across the United States. But on September 3rd, one young man finished that long journey– even though he is living with a rare genetic disease that can make walking painful. His name is Courtnay Midkiff, and he suffers from an extremely rare genetic disorder called Fabry disease. There are only a few thousand known people living with it in the United States. For the past six months, Courtnay has been trekking across the country to help more people learn about Fabry disease, which he has struggled with since birth.
We caught up with Courtnay to ask him a few questions about his journey.
Global Genes: When were you diagnosed with Fabry’s disease and what sort of symptoms do you deal with on a daily basis?
Courtnay Midkiff: I was diagnosed in 1997 or 98 when I was, I think, 8-years-old. On a daily basis, I deal with not sweating even in very hot settings, pain in my fingers and toes. Mostly my fingers, but it is like a burning, and some days fatigue. Just not really wanting to do anything at all.
GG: Walking across the country is a big undertaking even for any healthy person; does your disease impose any limitations for you on this journey?
CM: I think I do a really good job of not letting Fabry limit me and denying it the chance to stop me from what I want to accomplish.
GG: What states have you/are you going to be traveling through?
CM: I started in Virginia and went through North Carolina, Tennessee, Arkansas, Texas, New Mexico, Arizona, and now I am in California.
GG: Are you feeling healthier on your journey, have you had any physical setbacks?
CM: I think staying active and physically challenging myself on a daily basis has actually helped a lot of my symptoms calm down. I feel great. I have had days where I was sick and had to just stop and relax or take full days off to try and gain my energy back.
GG: What sort of people have you met on this trip? Any other Fabry or rare disease patients?
CM: I have met a lot of outgoing amazing people who have invited a perfect stranger into their homes and treated me like I was family. I have also had the opportunity to meet close to 100 other Fabry patients which is an awesome part of my trip. Before I started the only other Fabry patients I knew were my mom and brother, now I feel like I have a huge extended family of Fabbers.
GG: What has been the best part of your journey so far?
CM: One of my favorite parts is having the opportunity to meet other “Fabbers” and talk to them about living and surviving with the same problems that I have to deal with.
GG: What’s the first thing you’re going to do when your journey is over?
CM: I get asked this a lot and I have no clue. My band has a show in San Diego on September 6th, so maybe practice!
GG: What advice do you have for other patients trying to raise awareness for their rare disease?
CM: Don’t give up. A lot of people are going to doubt you, you may even doubt yourself. But in the end you can do anything YOU want to do. Don’t listen to the naysayers, be you.
About Courtnay’s Journey
With little more than a sleeping bag and camping tent, Courtnay began his journey in Virginia Beach, VA in March. Along the way, he’s met dozens of people who have provided him with meals, encouragement and even from time to time a warm bed. And for the first time ever, he’s had a chance to interact with other people affected by Fabry disease who heard about his walk and came out to meet him as he walked through their towns. Throughout his journey, he has also been working to raise money for the National Fabry Disease Foundation to support research to find a cure. To date, he has raised more than $12,000. His efforts are helping more people to learn about genetic diseases. While Fabry disease may affect small numbers of people, rare diseases as a group affect almost 30 million Americans—half of which have no treatment specific to their disease.
About Fabry disease
Fabry disease is caused by a deficiency of an enzyme that clears fatty substances from the body. This can result in a number of symptoms, like the inability to sweat, fatigue, stomach problems and chronic pain in the fingers and toes, to more severe complications, such as kidney failure, heart attacks and strokes.