A Personal Perspective: Alexis Ellsworth

My father and my grandmother are the two people closest to me that have the disease. I grew up knowing that there was something different, but it was normal for my family. I first started to experience symptoms when I was around the age of 10. It started with small spot of numbness on my feet. I wasn’t sure what to think about it. I had brought it up with my parents and they helped me keep an eye on it. After a few months of the numbness progressing, my dad took me to an IHOP and he shared his experience. He explained that my numbness might be a symptom of the disease in me. It wasn’t until I was 14 or 15 that I was actually tested for the gene during the trials in Boston. That was when I knew for sure that I had HSAN1.

My experience with HSAN1 has had its ups and downs. I have had issues in the past with wounds slow to heal. Currently I am dealing with that same thing. A fun trip to Disney has resulted in blisters that seem to be healing at a snail’s pace. I can’t always do the same things as my friends and that is hard. I have to take special precautions and deal with different consequences that no one else has to. It has been a challenge. I am growing in patience and understanding throughout the process. Despite my circumstances, putting my trust in God completely has given me peace through the hardest times.

I decided pretty early that I wasn’t going to let the disease define me. I am so many things and HSAN1 is just something I have. I am thankful for the people in my life who help me understand and work through the difficulties. HSAN1 has given me symptoms that at times, honestly, suck. But I am not dying, and I can still do so much. Keeping a positive outlook in the middle of the trials and keeping my trust in my creator has made all the difference. I find hope in the future and I look forward to any progress made to stop and maybe even reverse the effects of HSAN1. Until then, I will continue to live my life the best I know how.