This is a patient’s personal website.
For the past several decades, I have been living with a big question mark. My diagnosis kept staying in the general CMT, without knowing the subtype, details, or prognosis. The muscle atrophy of my four limbs kept progressing, the loss of sensation continue to worsen, other symptoms kept showing up one after another without a known cause. A few years go, my functionality all of a sudden deteriorated faster than ever, to a point that many aspects of my life are affected, career, hobbies, even social life. Nevertheless, I felt a strength in me that motivates me to keep going forward, to press on. I do not want to give up, I do not want to just exist. I still hope my life is meaningful.
HSAN1A is an extremely rare disease. There was a literature published about a patient’s case, which was part of a crucial link that led to my final diagnosis. This makes me realize that everyone can contribute something and help this group, not only the doctors and scientists who do research in the front lines, but also patients, family members, or anyone who cares about this disorder has his or her advantage point to make a difference.
There are still much to be discovered about HSAN1A. While waiting for more researches in progress, I hope I can do my part to find the cure for this disease and for those who are affected by it.
I observed that information pertinent to HSAN1A are mostly in English compared to other languages. Therefore, I have organized what I have read and learned from the published literatures and tried to provide it in other languages in hopes that this ailment can be seen by broader international communities and known by more people.
I am aware that my life is limited, and I may not be able to see the cure within my lifetime. However, I believe that as long as more and more torchbearers continue to join in and keep moving forward, the light at the end of the tunnel will eventually shine, a cure will be found, and the dream can come true.
Finally I would like to give special thanks to my friend Mr. Keli Chiang for cyber technical support, Ms. Violet Lee for logo design, Prof. Taeko Yoshida for Japanese language review, and all of you who visit this site. Your visit is my greatest comfort and honor.
Alyson Hsiao Nov.2020
Contact: Alyson.hs127@gmail.com