Living with SCA-14: My Story
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
About Me:
My name is Danne, and I live in Sweden.
I have a rare neurological diagnosis called Spinocerebellar Ataxia type 14 (SCA-14), a form of hereditary Ataxia
Challenges I Have Experienced Living with Ataxia:
Living with Ataxia means living with uncertainty. My balance is affected, my coordination is reduced, and everyday tasks can be more difficult than people might think. Some days are better than others, but the progression of the disease is always there in the background.
One of the hardest parts of living with Ataxia is that it is often invisible to others. People may not always understand the fatigue, the instability, or the mental effort required just to get through a normal day.
Another challenge has been navigating the system for support. Living with a progressive neurological condition brings uncertainty, both physically and financially. It can be stressful and emotionally draining when you are trying to manage your health while also worrying about your future.
Things That Give Me Meaning:
Despite these challenges, I try to stay active and positive. I have started a small massage business, even though I can only work limited hours. I also work part-time as a personal assistant, which is meaningful but physically demanding given my condition.
I am also a father of four adult children. They are a big part of my life and give me strength and motivation, even on difficult days. Being a parent while living with a progressive condition can sometimes be challenging, but it also reminds me every day why I keep moving forward.
Creativity has always been important to me. Music has been a big part of my life, and I continue to write songs. I also enjoy painting, which gives me peace and a way to express myself when words are not enough. Creativity helps me cope with the challenges of living with ataxia.
I want to contribute, to be useful, and to live a meaningful life — even with my diagnosis.
Why Writing has been Important To Me
I share my story not only to raise awareness about SCA-14, but also to connect with others who may be going through similar experiences. Living with Ataxia can feel lonely, but we are not alone.
There is always hope, even in difficult times.
Thank you for reading my story.
Written by: Danne Geson Winneräng
Edited by: Meg Elmer
We would like to thank Danne for sharing his inspirational story with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.
If you would like to listen to Danne’s song, please find it on our lived experience page at the bottom with our YouTube links. The song reflects some of the emotions, struggles, and thoughts that can come with living with a progressive condition like SCA-14.