Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Jordan Howell

Name: Jordan Howell

Age:  37

Where do you call home? I live in Houston, Texas, but I grew up in Dallas, Texas.

Education (degree(s): I graduated from the University of North Texas in 2002. I majored in advertising and film production. I worked as the film critic for the school newspaper for 2 years. 

What is your relationship status? I am single with no children. I have not, as of yet, found the one. Maybe I'm just too ugly!

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed in 1994. I was 15, and it came as a complete shock. My sister had recently died of Leukemia, and I was sent to a neurologist for, what I thought was, a back related injury from BMX bike racing. I did not know very much about Friedreich's Ataxia or understand the severity of the word, "progression." In hindsight, I can see a lot of the balance issues that led to my diagnosis.

Describe your transition from walking to a wheelchair? I had minor balance issues throughout High School. I was mistaken for being drunk or on drugs many times. It became more dangerous during college. Falling down stairs or injuries from being stubborn, finally, made me seek out mobility aides. Over the course of a year, I went through AFO'S, canes, and walkers. I'm bought my first wheelchair soon after my 21st birthday. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I go outside in my manual wheelchair everyday. I have a set routine of exercises I do every night before I go to sleep. The routine includes a lot of stretches, a lot of sit ups, a lot of hip exercises, and a lot of hand movements. I also do a lot of arm exercises while in my wheelchair everyday. I try to eat relatively well everyday. Even though I can't stand it, I drink a lot of water everyday. I take a cocktail of vitamins everyday. I try to do my best to take care of myself, but I'm always striving to do more.

When FA gets you down, what do you think/do to feel better? I usually think about my sister, and how lucky I am to not have leukemia and go through everything she had to deal with. There are so many people that have it so much worse than I do. I love to listen to music. Laughter is the best medicine.

What is one way living with FA has POSITIVELY affected your life? FA has made me a better person. It has sharpened my patience and given me a greater sense of empathy. On an emotional level, I am much more understanding of people. I've had a lot of practice at laughing at myself and not taking things too seriously. It is much easier to enjoy the little things in life.

What is a favorite motivational quote of yours? If you fell down yesterday, then stand up today. - H G Wells

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Learn to laugh at yourself, and enjoy the little things in life. Stay active and exercise all the time. Try to always stay positive. I think one of the better ways to fight FA is to get involved, and be proactive in finding a cure.

What is the first thing you want to do when a cure/treatment to FA is found? I would like to go on a very physical and difficult adventure. For example, climbing Mount Everest. To prove to myself the emotional strength FA has given me.

JordanHowell sig 16

J0yalWY$!2911

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
Event H.jpg