An Introduction to My Darling Disability

An Introduction to My Darling Disability

My name is Kendall and I was diagnosed with Friedreich’s ataxia (FA) at the age of 25.

I grew up in Katy, Texas, where my childhood was quite happy. I was always very active, participating in cheerleading, the swim team, volleyball, softball, track, and any other sport I could find to join. At the time, I was just like other kids my age.

During my sophomore year of high school, I met the love of my life, Kyle. We dated throughout high school and college, and in the summer of 2008, we were engaged to be married. We started planning the wedding right away.

We enrolled in dance lessons to prepare for our wedding in 2009. I remember thinking, “I used to be a lot better at dancing. Why does this suddenly feel so awkward and difficult for me?” During the dance lessons, I felt a lack of coordination that I couldn’t explain, my body wasn’t responding the way it used to. I continued to struggle with agility over the next three years. I attributed my struggles to aging or just being a little out of shape.

However, in 2013, I just knew that something wasn’t right, as my balance continued to get worse. I noticed changes in my body, and I began to struggle with my speech and ability to walk. My symptoms didn’t add up, something was off.

So began my diagnosis journey

I went to a new internal medicine physician to discuss my growing list of concerns, and that doctor referred me to a neurologist. We did the initial neurological exam (walk in a straight line, follow my finger, wiggle your toes, etc.) and then he tested my reflexes. We discovered that I did not have reflexes. I was in disbelief — everyone has reflexes, right?

After the initial exam, he discussed all the possible causes of my seemingly random symptoms: vitamin deficiencies, blood disorders, multiple sclerosis, tumors, gluten intolerance, or genetic diseases. He assured me that everything would be fine and we would figure this out together. We began ruling things out: My blood-work was negative, my MRI was clear, my muscles were strong.

He wanted to rule out any genetic causes, so we did a comprehensive panel of tests. I remember thinking, “Oh, just another blood test to rule something out.” Both of my parents, brother, grandparents, aunts, uncles, and cousins were all fine, so I didn’t think genetics would be an underlying cause of the symptoms I had been experiencing.

I went to the appointment, on Aug. 19, 2013, fully prepared to find out what the next round of tests would look for. Luckily, Kyle and my parents were there with me when we received the results. The doctor walked in and said, “Kendall, I wish I had better news for you. I feared that this might be the case. You have Friedreich’s ataxia.”

Fast forward to today

We now have a better understanding of FA and my specific case. I have been classified as mild-to-moderate, and I have a good prognosis because of my later onset. A number of factors can indicate how your case of FA will progress. To date, my outlook is fairly good; I have a clean bill of health from the ophthalmologist and cardiologist, and we do not foresee the possible cardiac and vision symptoms becoming a part of my journey.

In terms of my current daily life, I walk more slowly and I am less stable. I am not as graceful as I used to be, often relying on friends and family to lend me an arm. I also can’t walk down stairs, and I bump into more corners and obstacles, “ping-ponging” down hallways.

Despite everything, I am still thankful to be able to get around without a walking aid. Some days are good, while other days are bad. My symptoms will progress over time, but I am blessed to have a diagnosis so I can prepare for the future.

I am currently living life to the fullest. While FA is always on my mind, I try to continue down the path of life I choose – not the one chosen for me by this disease. Life is a gift, so I do not plan on wasting it by feeling sorry for myself. I am traveling, picking up new hobbies, making new friends and enjoying outdoor activities all across the beautiful Texas Hill Country.

Kyle and I welcomed our son, Brooks, in October 2014. We became a family of four in May 2017 when our daughter, Collins, was born. Being a mother is the greatest thing I have ever done and I am eternally grateful to God for blessing me with my family.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

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