An Introduction to a ‘Practical Guide to Life with FA’

My name is Christina Logan, and doctors diagnosed me with the rare neuromuscular disorder Friedreich’s ataxia at the age of 21.

I grew up in Holland, Pennsylvania, with my dad, mom, sister (Catherine), and brother (Matthew). I was very active in the music community and participated in choir, the marching band, and the orchestra. These three musical groups led to lifetime friendships and gave me a sense of belonging. My family supported me in everything by attending every football game, performance, and seasonal concert. Love, guidance, and support always surrounded me.

When I was a junior in high school at 17 years old, it was getting harder and more tiring to rehearse for each of the three musical groups after school. I would become fatigued easily and lose my balance frequently. My family and friends didn’t think much of it. They just thought I was a clumsy teenager!

After graduating high school, I decided to pursue my career goals and attend Johnson & Wales University’s College of Hospitality Management in Providence, Rhode Island. I was nervous about moving five hours away, but I knew I still had a great support system at home, only a phone call away. Throughout college, my balance worsened, and I noticed changes in my speech. Something didn’t feel right.

The road to Friedreich’s ataxia

During college breaks at home, my family and I went to local hospitals. After four years and four different hospitals, along with numerous doctors and multiple unanswered questions, I was finally diagnosed with FA at Johns Hopkins University on April 20, 2011.

I went through numerous tests, including the neurological FARS exam (walk in a straight line, follow a finger, check for reflexes, etc.), an electroshock test on my legs, and genetic blood testing (my parents are both carriers of the FA gene).

I remember the doctor saying to my family something like, “The good news is that you have Friedreich’s ataxia since it is the mildest form of ataxia, and the bad news is that you have Friedreich’s ataxia because there is no treatment or cure.” It was scary and a lot to take in, but my family and I knew that we could get through this together.

I did not let FA affect me. I got involved in the FA community in Rhode Island, graduated from college, and within a few months, I moved into the city of Philadelphia and landed my first job in the hotel industry.

Fast forward to today

My family and I have a better understanding of my diagnosis, and we are very fortunate to see and have Dr. David Lynch right in our “backyard” at the Children’s Hospital of Philadelphia. My progression is slow; I am classified as mild to moderately affected. Walking and fatigue are my constant battle, but using my rollator has been eliminating that. I am thankful not to have any cardiac, hearing, or vision concerns.

My brother Matthew was recently diagnosed with Friedreich’s ataxia, but does not show any symptoms and may never, according to Dr. Lynch. The doctor only thought of testing him for FA because of his scoliosis and my FA.

I have completed three clinical trials and two studies. I am very involved in the FA community as a strong advocate and was a Friedreich’s Ataxia Research Alliance (FARA) Ambassador. My family hosts a grassroots event, the 5K Mother’s Day Race for Christina, and rides as Team Christina every year at rideATAXIA Philly. I do this all for my brother and those affected by the disease to ensure a treatment or cure will be discovered in our lifetime.

I am now 27, have just completed my master’s degree in business administration via the online program from Johnson & Wales University, and am engaged to my loving, supportive, and wonderful fiancé, Justin.

I strive to live a full and independent life without letting my diagnosis get in the way! I am pursuing my career goals by working at the prestigious Bellevue Hotel, a part of the Unbound Collection by Hyatt, and I will marry the man of my dreams this October. I am so excited to see what this next chapter of life brings!

My column, “A Practical Guide to Life with FA,” is designed to be a resource for FA patients and their families and caregivers. I will cover various topics including tips and how-tos for everyday adaptations, and the challenges one may face in their diagnosis. For example, I may write about using public transportation, transitioning from walking to a wheelchair, and making a home accessible, among other things.

I hope to bring comfort and peace to the FA community by sharing my experiences with these topics on my diagnosis journey. I also hope my topics will create an open environment for people to post comments, experiences, and questions.

***

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.