Being diagnosed with limb-girdle muscular dystrophy (LGMD) at a very young age was confusing. Of course, I did not know of it at 5 or 6 years old. My mother, who also had no knowledge of it, took me to see 2 different doctors before we finally got a diagnosis. One doctor diagnosed me with cerebral palsy but my mother was not comfortable with that diagnosis, so she got another opinion.
When I was in the 4th or 5th grade. a physical therapist told me that one day I would need a wheelchair but I did not believe it. As a child, I did not believe it because I did not understand it. When you are that young you do not think of things like living with a disease. Physically, I knew I was not like other children just by the way that I walked but I did not know the severity of it.
Growing up with such a serious condition, I wish there was more information about the disease. No one told me that one day I may have respiratory problems due to me having a muscle disease. No one would understand it unless they were going through it, but I wish doctors and specialists would have sat down and explained it more to my family. My mother was left with the diagnosis for both my sister and me and she still did not know what to expect. She was told that we would be in wheelchairs but that was all. I remember when I could barely pronounce the disease because I was so young.
We have had to learn as we journey through life and we are still learning about LGMD. Now that I am an adult, I have looked into treatment options. Since there is no cure for LGMD, the only treatment option that has always been recommended to me is physical therapy.
Physical therapy helps to slow down the muscles from getting weaker. I know that I have to eat healthily and stay as active as possible even though that is hard given that I get tired so easily. But I do wish for other treatment options other than physical therapy.
There is still limited information about the disease. My life has changed since being diagnosed over 20 years ago. As a child, I was able to walk, climb stairs, and go to the bathroom on my own without needing help. It was still difficult because I would get tired easily but I was still able to do it. Now I am dependent on a wheelchair every day, all day and I slept on a ventilator at night.
I went from being stared at as a child because of walking differently than most people to being stared at because I use a wheelchair. I do most things differently than others and I move slower. I now require more care and I rely on medical equipment to keep me alive and help me to be independent.
Although I was diagnosed many years ago, I still have family members who do not understand the diagnosis. My family will still sometimes ask what the diagnosis is and some will even confuse it with other diseases. My family and friends are all still learning along with me. I do not expect them to know it all because I am still experiencing different things regarding this condition.
There are obstacles I am still overcoming and I try to remain positive through it all. Overall, my family is supportive because they see LGMD has not stopped me. Social media has also been a great tool to connect and meet people like me. And I do not have a lot of disabled friends or family, so I like to get to know others I can relate to. Not only do I enjoy meeting others in the disabled community, but I learn from them. I like to learn more ways to be as independent as possible.
Just by meeting people through social media, I have learned we are all alike yet we are all different and unique. Seeing other disabled people go after what they want in life and not letting it stop them really inspires me and encourages me to do the same.