Faces of Ataxia: Yesenia Ramos’ Journey and Poetry

Yesenia Ramos Journey2

At twenty-three, Yesenia Ramos from Edmond, Oklahoma, reflects on her life with Friedreich’s Ataxia (FA), a condition she was diagnosed with at the tender age of six. Her Mexican heritage is a significant source of pride, and she lives with her supportive parents and an older brother who also has FA.

Yesenia’s path to diagnosis was marked by frequent sprained ankles and a persistent sense of unbalance, symptoms her parents recognized from their experience with her brother. Though the early memories are faint for Yesenia, she vividly recalls the progressive impact of FA, which she feels has stolen much of her childhood and teenage years.

Despite these challenges, Yesenia has channeled her experiences into poetry. Her published book, *Emotionally Deteriorating, Emotionally Distressing: Who I Am With FA*, is available on Amazon. Poetry has become a therapeutic and expressive outlet for her, allowing her to share her journey and raise awareness about FA.

In her poem “Sick At Heart,” Yesenia poignantly describes the emotional and physical burdens of living with FA:

*FA is all that I am anymore 

all I have to offer people is a big ball of symptoms 

I am as burdening as a nonstop war 

my life is a sore, truthfully 

I take everything with hurt on the side 

it’s outrageous 

I’m truly empathetic 

FA also makes me less “useful” 

like an imitation of a drunk with the awareness of a hawk 

I’m learning to accept my limitations 

but I’m struggling with accepting the reality of my limited life and brutal future 

16 years later and the only thing that’s changed is my emotional tumor 

It’s so easy to feel like a bad friend for needing more help than others 

its as if my reality was abruptly full of highly sensitive ulcers 

no one teaches you how to grieve the life you should have had 

Friedreich’s ataxia defines me 

it’s literally all over my DNA 

it makes me sick at heart*

Yesenia also maintains a poetry page on Facebook, where she shares her work to educate others about FA. Her dedication to raising awareness is commendable, and her advice to those newly diagnosed with FA is to practice patience. She encourages them to take deep breaths, give themselves breaks, and understand that although the journey is tough, patience can help them navigate through it.

Yesenia’s resilience and creativity are truly inspiring, and we fully support her mission to spread awareness and understanding of Friedreich’s Ataxia.

We would like to the Jason and Yesenia for sharing this inspirational story with us. 

Please share your thoughts and/or comments on this or any other article.  And if you would like to get involved and share your experience with Ataxia, please contact us.  Join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.


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