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A lil education for my followers 💚

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Today we acknowledge Limb Girdle Muscular Dystrophy awareness day! Limb-girdle muscular dystrophy is a group of disorders which affect the voluntary muscles around the hips and shoulders. The conditions are progressive, leading to a loss of muscle strength and bulk over a number of years. Onset may occur in childhood, adolescence, young adulthood, or even later. Males and females are affected in equal numbers. Most forms of limb girdle muscular dystrophy are inherited in an autosomal recessive manner. Several rare forms are inherited in an autosomal dominant pattern. While there are no treatments which directly reverse the muscle weakness associated with this condition, supportive treatment can decrease the complications. There are at least 20 different types of limb-girdle muscular dystrophy. Learn more: https://rarediseases.info.nih.gov/diseases/6907/limb-girdle-muscular-dystrophy #md #musculardystrophy #musculardystrophyawareness #limbgirdle #limbgirdlemusculardystrophy #disability #disabilities #disabilityawareness #disabled #invisibledisabilities https://www.instagram.com/p/CUcyU5PgWWT/?utm_medium=tumblr

#md #musculardystrophy #musculardystrophyawareness #limbgirdle #limbgirdlemusculardystrophy #disability #disabilities #disabilityawareness #disabled #invisibledisabilities

Dear Julianna,

My name is Brad Williams. I’m 53 years old and have limb-girdle muscular dystrophy. LGMD is hereditary, which means I’ve had it all of my life. But until I was 18 I didn’t have any symptoms of muscle weakness, and by all appearances was completely healthy. I realize this is different from your life experience and those of many others who have written letters, who have had muscle weakness from birth or starting at a young age. But I think it illustrates an important point: none of us knows how our life is going to turn out in terms of our health. Someone can appear to be completely healthy, as I was as a child and teenager, but turn out to have a serious illness (in my case two serious illnesses, as I also have Type 1 diabetes). Or they can be given a very poor prognosis as a young child, as many previous letter writers were, yet greatly exceed anyone’s expectations in lifespan, quality of life, and in their accomplishments.

None of us know how our lives will turn out, but in order to make the most of our lives I think the following things are important. First, to believe that our lives and our accomplishments have value, in spite of our disabilities and health problems. Secondly, to believe in our ability to overcome obstacles, and that we get out of life what we put into it. Life isn’t always easy, even for many people who don’t have disabilities, but I believe living it in the best way we can and striving to achieve goals is always worthwhile.

Since I began having symptoms of MD I continued my studies for many years, and eventually became a scientist. The subject I majored in in college is physics—Steven Hawking is one of the world’s most famous and respected physicists; he has ALS which is also a neuromuscular disease. Many scientists are glad that Hawking has continued his research and made many amazing discoveries, and not let his disability stop his career. In the last year, I moved across the country to start a new job for a foundation that sponsors research on my particular form of muscular dystrophy. I’m very happy that I have this opportunity to be involved in research to find treatments for this disease, and also to help other patients find a diagnosis if their doctors don’t know what disease they have.

Most importantly, I want other people with muscular dystrophy to know that they aren’t alone, that there are other people out there with MD who are living successful lives, and can provide help, advice, and encouragement. I had symptoms of MD for almost 20 years before I ever met another person with the same disease, and in some ways that was the hardest thing. I don’t want anyone with MD to feel alone, and neither do any of the other people who have written letters before me. We are all part of a community, and helping each other will make all of our lives more meaningful and fulfilling. I’m not an especially amazing person living with MD by any means. I have met many patients with different types of MD and different life experiences, who are all amazing in their own unique ways. You have something amazing and special to offer the world, Julianna, and we can’t wait to see what that will be!

Photo descriptions: 1. Brad smiling sitting in his wheelchair in a khaki jacket and blue designed polo shirt at the office of the Jain Foundation, where he works as Director of Research and Advanced Diagnostics. The Jain Foundation supports research in Brad’s form of MD, LGMD2B. Behind him are various pictures about LGMD2B/Dysferlinopathy 2. Brad goes “snow-wheeling” with his brother in the mountains of California (in July!). Brad is in a specialized wheelchair to move around in the snow wearing a blue button up shirt, khakis, black shoes, and a blue hat and glasses. His brother is next to him in black shirt, shorts, sunglasses, and flip flops. The are both in the snow smiling.