by Angela Davis, Marquette, Michigan
I first started noticing something was a bit off when I was around age 15. People often asked if I hurt my leg or knee. They said it looked like I was walking with a limp. I always said, “No, I am fine,” and brushed it off. After a while, I got sick of people asking so I would make up an excuse and say yes I tripped or hurt my ankle so they would stop asking.
Around age 19 when I started a part-time job working at a lumber company stocking shelves, I noticed that it was very hard to put my hands above my head. I just assumed that this was because the boxes were heavy. I thought that it was normal and I just wasn’t as strong as the men. Again, I brushed this off. Months afterward, I would come home crying from back and neck pain and just couldn’t understand it. I consulted many doctors and eventually was led to a local medical center where they hooked electrodes up to my back that would stimulate and move my muscles for me. This hurt and didn’t give much relief. I also had upper arm pain that was unexplained.
Years went on, doctors’ appointments would go on. No one knew what was wrong. My general physician knew of my neck and back pain. I started seeing chiropractors that offered some relief but the pain always came back. I started acupuncture and cupping. Those helped for a brief time but again not long-term. I started to think I was going crazy. How could I be hurting so much at such a young age?
My dad was officially diagnosed with FSHD1 from Mayo Clinic about 4 months ago. My father lives in chronic pain and treats his symptoms with medication (pills) and they have some terrible side effects. When we go swimming I always noticed his scapular area looked funny and his “angel wings” on his back. We now realize that my grandfather had this disease as well.
After my dad got his official diagnosis from Mayo Clinic, a note was enclosed that said this was hereditary and that his children (just myself) had a 50 percent chance of having this muscular dystrophy. The closest lab and genetic specialist was in Green Bay, Wisconsin, so we traveled there. I met with genetic specialist Emma Sabel and she explained the procedure, which was a simple yet extremely expensive blood test. This test would let me know if I had the same disease as my father.
I received a voice mail from Emma confirming that I did indeed have FSHD1. She explained the kilobases (Kb) of the “repeat units” in my genes. My number was at 29 Kb, and my fathers was a 33. She mentioned that normal was over 38 Kb. With my number being lower then my father, it was disheartening. I had a quick sob session and went to the gym that same night—the night I learned that I had muscular dystrophy.
I strongly urge anyone who has a family history of FSHD to get genetically tested because although there is no cure today, this doesn’t meant there won’t be one in the future. And having a diagnosis of FSHD does not define a person.
I work full time as a secretary at our local university, and sitting at a desk staring at a computer screen and typing all day does not help. I often have to get up and take breaks or short walks and stretch my back muscles out. Currently I do not take medication or other substances to treat my symptoms. I treat my pain symptoms with yoga, swimming, and light weight lifting. I try to keep my posture straight while sitting. I pray and attend church regularly. I give praise to God to help look over me and my father. I have a strong faith, strong family, and great friends that I know I could lean on if need be.
I have an 8 year old daughter and I am fully aware that she has a 50 percent risk of having FSHD. We will not have her tested until she is 18. I do not want her to even be aware of my condition or pain. I don’t want her to have to worry about me or what her future holds. I want her to be active and participate in sports.
I wish more people knew about this disease and how debilitating it is. Every single person with this disease has similar yet different symptoms. I choose to focus on the positive and live life like it could be my last day.
Recently, we went on a family vacation to Orlando and went swimming with dolphins. This is something that was on my bucket list forever. Once I was officially diagnosed I knew it was the time to pursue this dream. We did, and I am so glad that we have those memories.
Signing off for today. Live Strong.