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FARAFARA Cure FA

Crystal

Name: Crystal 
 
Age: 36
 
Where do you call home? St. Louis, MO
 
Education (degree(s):  Just graduated (last weekend) with an Associate of Arts in Teaching
 
What is your relationship status? Do you have children? I have been married for 16 years and have a 10 year old son.
 
What's a typical day for you? My typical day will be changing. For the last 3 years I have been in school, so my days have consisted of school, homework, housework, and taking my son to his extracurricular activities (baseball, martial arts, gymnastics, cub scouts, and anything else he has decided to try over the years). Since January of this year, I have been going to the gym 3 days per week.
 
Since I am not in school anymore, I am trying to catch up on my house work, since I have not done as much as I would have liked in recent years. I go to the gym 3 days a week. This takes up half of my day because the gym is 45 minutes away one way and my workout is 90 minutes. Also, my son is in cub scouts and my husband is leader and I am assistant leader. Planning activities for our den and also assisting our cubmaster is very time consuming. Now that I am out of school I can devote more time to planning events for our scouts.  I also hope to relax more and read books for fun again (I have not done much leisure reading since I started  college).
How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 19. As a child, I was clumsy and had leg pains. My doctor diagnosed the pain as arthritis and growing pains. As far as the clumsiness, no one ever thought of it as a medical issue. I ran, jumped rope, rode a bike, and played sports with my friends (J was never good enough to play team sports, but still had fun with friends). When I was 17, my grandma started to get concerned and thought it may be more than clumsiness. I started  seeing doctors at 18 and went through 6 months of doctors’ visits, referrals, and painful tests, some of which made me very ill,  before the doctors performed a DNA test and diagnosed me with FA.
 
Are there any others with FA in your family? None that I am aware of.
 
Describe your transition from walking to walker/wheelchair. For years I refused to use any medical equipment, although many thought I needed to. At age 26, when I was pregnant with my son, I started using a wheelchair for long distances and used a cane if walking alone at other times (like going in and out of work). When my son was a baby, I used his stroller as a walker when we went anywhere and used it to take him from room to room in my house. Usually at home though, I would just hold on to the walls to get around. I don’t remember my exact age, somewhere in my early 30’s, that I started using a wheelchair full time. I had fallen and torn a ligament in my knee and could not walk safely anymore, even while holding on to walls, so I knew that it was time to start using the chair full-time.
 
What do you like to do to stay active and what type of exercises work for you to stay strong? There is an independent living center that has a gym with equipment designed for those with mobility issues. I work out 3 days per week. I use a standing from with motion (it kind of works like an ellipictal), a sit down machine that is like an elliptical, a bike in which I can pedal with my legs and arms at the same time, and a variety of weight machines.
 
A few years ago, I was awarded the AAI grant and enjoy riding my Catrike. Unfortunately, in recent months it has become more difficult to ride because I can’t keep my knees in the correct position. Currently, there is an OT working on attaching lateral supports so that I can start riding again.
 
Do you have any hobbies or special interests? I like to read, to go camping, and to travel. My favorite is road trips and seeing new places, but money limits how much of that I can do. It is also difficult to find good accessible accomodations.
 
What is a good trick to make daily life easier? I don’t have any tricks that I can think of. I just take days one at a time and do whatever works best at the time.
 
When FA gets you down, what do you think/do to feel better? There are days that I feel down and just cry and cry. I do this alone. I don’t want people to “feel sorry” for me, I am not looking for sympathy, so I try to keep the sadness to myself. Then I get over it. My life is too busy for me to dwell on things that I can’t control.
 
What is one way living with FA has POSITIVELY affected your life? Because I live with FA, I am more empathetic toward others.
 
What is a favorite motivational quote of yours? The happiest of people do not necessarily have the best of everything; They just make the most of everything they have ***unknown
 
I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do. ***Edward Everett Hale
 
What is piece of advice that someone with FA has given you that encourages and inspires you? Never give up, always keep pushing.
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Always do what you can for yourself and do not allow others to set limitations for you. Also, do not compare yourself to others with FA. Progression and symptoms are not going to be the same for everyone. 
 
What is the first thing you want to do when a cure/treatment to FA is found? I have a few. 1. Walk around the house in jammies and socks and plop on the couch or sit on the floor. 2. Jump on the trampoline with my son. 3. Walk on the beach, or in the mountains, or to my mailbox! 
 
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? This statement is true to me. Yes, I get sad that there are things I cannot do, but to dwell on them would make me an extremely unhappy person, which I am not. Instead, I live like a “normal” person. I drive my son where he needs to go, clean my house, pay my bills, go grocery shopping, etc. I may be slower or have to do some things differently than others, but I do everything that I possibly can.
 
Tell us a little more about you…I can no longer work full-time, but I recently graduated with an AAT. Next school  year I will begin substitute teaching. I chose substituting because it will allow for the flexibility that I require. Also, having a teacher with a disability will teach younger generations about differences in people.
 
From Jeannie....A few questions mom to mom...I have a 15 year old son and a 12 year old daughter.
 
How did you handle chasing a toddler around?  My house is small, so it was easy to put a baby gate up and close doors to keep him contained and safe at home. We didn’t go anywhere alone until my son was 3, then I had one of those wrist straps that some people call leashes. It just had a Velcro wrist strap for me and one for him and kept us tethered together.  
 
How did you pick up and cuddle and give hugs for boo boos? When he was little I had enough core stability and strength to comfortably pick him up and put him on my lap. He would also just crawl onto my lap…he still tries to sit on my lap sometimes, but he’s so tall I can’t see around him! lol
 
Do you still drive? Yes, I have hand controls. I got them when my son was 2, but didn’t have a chair lift for a year after that
 
Do you do the cooking? I do, but I don’t like to. It’s one of my most difficult chores, but now that my son is older he helps out with that a lot.
 
I greatly admire fa moms, they are wonderful!
 
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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.

 

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