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Day 3 of 30 Days of MD Topic: Living with LGMD2I This is @disabledrising’s story: Hello everyone! My name is Anjar and I have Limb Girdle Muscular Dystrophy (LGMD) Type 2I. I was ambulatory most of my life, but within the last 5 or 6 years, I completely lost the ability to walk. My LGMD initially manifested itself by toe walking, enlarged calf muscles, and difficulty getting up from low seats. I had many mixed feelings when it came time for me to start using a wheelchair. On one hand, I was able to travel longer distances and still manage to conserve energy. But sometimes people in public will either stare too long at me or avoid interacting with me altogether. As proud as I am to be a part of the disability community, there are serious problems with our society that bothers me. I want society to be fully accessible for people with disabilities. I want to look at the media and see my own identity, a Bangladeshi, South Asian male, reflected. We cannot have a just and equitable society until people with disabilities are fully included. My LGMD eventually began to affect my heart and lung muscles. I had to undergo a heart transplantation about 8 years ago, one week after my high school graduation. I’ve been doing well from a cardiovascular point; however, my kidneys started to fail a few years ago because of side effects from transplant meds. I now must go to dialysis 3 days a week and I’m currently awaiting a kidney transplant. On top of everything, I got pancreatitis last year, which caused me to develop Diabetes. My days are typically spent monitoring blood sugar, administering insulin, and avoiding food that would increase my phosphorus and potassium levels. I’m not telling you this to elicit sympathy, but rather to give a better picture of what my everyday reality is. Despite all my significant challenges, I was able to graduate last year with a Bachelor’s in Social Work from North Carolina State University. I hope to use my degree to fight for disability rights and disability justice. I hope that everyone can read each other’s stories this month and realize just how resilient our community really is. #MDAwarenessMonth #MDAwareness #30daysofmd
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