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FARAFARA Cure FA

Yesenia Ramos

YeseniaRamos1Name: Yesenia Ramos

Age: 20

Where do you call home? Edmond, Oklahoma

Education (degree(s): I feel limited on my physical abilities I haven’t considered it, besides I am not sure how I can get financial help for my school and I don’t want to depend on my parents.

What is your relationship status? Who do you live with? I’m single; I currently live with my parents and brother

What's a typical day for you? A typical day for me, stay home, play video games, watch movies, read and write, depending on my mood.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 11 years old, so it’s been about 9 years. My mom would notice that I walked imbalanced or like a drunk. She compared my symptoms to my brothers and took me to MDA (muscular dystrophy association) to get checked and tested. They called my mom and told her I came out positive for Friedreich’s Ataxia.

Are there any others with FA in your family? I have an older brother, Aaron Ramos, who is 26 years old.

Describe your transition from walking to walker/wheelchair. When I was in 5th grade I was diagnosed and I remember warning all my friends that in 6th grade (middle school) I was going to be in a wheelchair. When I finally entered middle, all my friends looked at me like what I had was contagious, like they were afraid of me now. I went from popular to an outcast.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do very little physical exercise, but I maintain my self strong mentally. The way I do it is talking to family and friends and giving them motivation. 

YeseniaRamos2Do you have any hobbies or special interests? I write poetry to cope with my depression and anxiety. I love writing in general.

What is a good trick to make daily life easier? There’s no trick to make it easier, however I like to write and socialize with my family and friends through technology. Adding to it that I like to sleep as much as I can.

When FA gets you down, what do you think/do to feel better? I tend to listen to music and/or write poetry.

What is one way living with FA has POSITIVELY affected your life? One way is family and close friends, because they treat me with respect and no difference. They let me be aware of what’s going on in and out of the family, they try to help out but at the same time they let me be independent.

What is a favorite motivational quote of yours? “Don’t judge a disability by its visibility.”

What is piece of advice that someone with FA has given you that encourages and inspires you? When I asked my friend, Michael, if he has ever been stuck in depression and how he got through it he said “I learned about genetics and about the actual chances. I know you didn’t mean literally but a literal answer is as close as you're going to get. There is no answer as to why you were dealt a *** hand of cards. We just were.”

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Always try and keep your mind busy. Make sure you have an outlet for your emotions, don’t bottle them up because it only gets worse.

What is the first thing you want to do when a cure/treatment to FA is found? I would want to move out to my own house or apartment and be 100% independent.

"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? It means that even if FA has me physically limited that doesn’t mean I cannot do other things or that it’s the end of me. In the face of adventure, you write, read and take chances to go out every now and then you’re not as limited as long as I’m mentally strong.

Tell us a little more about you…As you should know by now, my name is Yesenia Ramos; I’m 100% a daddy’s girl, I’m a very witty introvert. I have had two scoliosis surgeries, one surgery to remove my tonsils because I suffered from sleep apnea and another surgery to relax my tendons on my feet because my feet were deforming. I dropped out of high school because my depression and anxiety got really bad; I do regret that day and I do want to get my GED.

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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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