By Alyce Collins
AFTER BEING diagnosed with a progressive GENETIC DISEASE at just eighteen, following years of thinking she was CLUMSY, this woman is now showing others that a genetic condition doesn’t define your life – as she admits that life can still be fulfilling even in a wheelchair.
Freelance contractor Kelly Barendt (26) from Ohio, USA, had always classed herself as ‘clumsy’, but when she started struggling to walk while carrying a drink, holding onto railings and walking up tiered stands, Kelly became more aware of her struggle, which heightened her growing anxiety.
Kelly started to avoid walking in front of people as it added to her nerves. As her walking grew worse, Kelly would often miss school when she knew there was going to be a school assembly which meant she needed to walk up the tiered stands. Kelly even saw a physical therapist to work on curing her clumsiness, which came to no avail.
At just 18 years old, Kelly’s primary care physician referred her to a neurologist, and she was then diagnosed with Friedreich’s Ataxia (FA), a recessive genetic disease which gradually causes the loss of sensation in arms and legs and can impair speech over time.
FA has limited Kelly’s life somewhat physically as she now uses a wheelchair for longer distances. However, despite her condition, Kelly has managed to complete a postgraduate course, studied abroad in Luxembourg for five months, and she now lives by herself, relishing her independence.
When she was first diagnosed, Kelly feared that her life would no longer be hers to live, but after eight years of living with the disease, she hopes to show others that life can be just as fulfilling as ever before, regardless of their condition.
“I was very clumsy in school, and it became even worse in later years,” said Kelly.
“Anxiety hit me every time we had an event in the school gym because I was terrified of the stands outside. It got to the point where my parents would let me stay home if we knew about a school assembly in the gym.
“I always had to tightly grasp the railing when going downstairs for fear of falling and I had difficulty walking while holding a full glass of water or mug of coffee. I tried to avoid walking in front of people who were sitting and watching because it made me nervous.
“I’m sure my parents and friends noticed it more than me, but since I wasn’t able to watch myself, I only know what made me nervous and what gave me trouble.
“I went to physical therapy to work on my clumsiness, but it didn’t seem to help. Finally, my primary care physician referred me to a neurologist who determined it was FA. It’s progressive, so at first, I just had some issues with balance and being clumsy. Now, nearly eight years later, I depend on a walker and a wheelchair for longer distances.
“When I was diagnosed, I felt partial relief because I finally had an answer and realised it wasn’t my fault I wasn’t getting better. The other part of me sort of left my body, and I blankly accepted the information. I was upset, of course, but mostly, I couldn’t believe this was happening to me; it was surreal.
“My walking worsened and walking longer distances across my university campus became increasingly difficult. I was exhausting my body trying to keep up with my peers.
“When the weather is nice and my friends and I want to go to the park or a nearby bar, I use my wheelchair about once a week.
“FA has stopped me from being able to do certain things, but I don’t focus on that. What it prevents me from doing doesn’t really matter in life – I have many friends who go out on weekends and bar hop all night. Occasionally I feel down that I can’t join them, but then I take a step back and think about how I’m still living a fulfilling life without doing that.
“I completed my postgraduate course, even though it was extremely difficult. I am living alone, supporting myself. I do have some support, but I’m working towards becoming fully independent.”
Kelly started her blog, My Darling Life With FA to share her experiences and raise awareness for FA, which she admits very few people have even heard of. Being so open on social media has also allowed Kelly to connect with others, whether they have FA or not.
When she was first diagnosed, Kelly worried that her life would be solely centred around her condition, but she hopes to remind others that this doesn’t have to be the case.
“I’m fortunate to be surrounded by kind and supportive people, so gladly, I’ve never received negative comments. However, in university I had some negative experiences with advisors. They didn’t say anything specific about my condition, but made it clear I wasn’t supported in battling FA within the program,” said Kelly.
“I definitely don’t think enough people know about FA. Unless they’re a doctor, I can almost guarantee someone I meet for the first time has never heard of it. Greater awareness is so important for funding research to find a treatment or cure for FA.
“Through blogging and being so transparent on Instagram, I’ve connected with many like-minded people who are dealing with similar challenges. I’ve built a little community.
“It’s also helped me find purpose in supporting others through FA, rare disease, chronic illness, or disability.
“I want others to see that it is possible to live a life full of love, happiness, and passion when you have FA, disability, rare disease, or chronic illness. It’s what I needed to hear when I was diagnosed at 18 and will hopefully help others.
“I have plenty of other interests, such as style, travel, design and photography. I want to show all of this, because I think it’s important for others to see, even if their interests differ. Your life doesn’t have to revolve around your condition.”