Neuro Note 2
Sannah's Story - Living with Myasthenia Gravis. A personal narrative as well as a news article about a woman living with a visual impairment as well as Myasthenia Gravis.
Sannah, a Scottish Muslim female who is 25-years-old, was diagnosed in 2014 with Myasthenia gravis (MG) but that diagnosed did not come quickly after symptoms started. Like many other neurological disorders, it is hard to pinpoint a condition when symptoms mimic other diagnoses. Sannah also lives with albinism, a conditioned that affects the pigmentation of the hair, skin, and eyes. When she started having vision changes, doctors blamed it on her condition instead of looking further into the issue. In 2013 she was in the middle of pursuing her degree and struggling with "double vision and watery eyes" but when Sannah went to seek help her doctor exclaimed that it could also be a symptom of putting her eyes under more stress from reading and using her computer as well as a complication from her albinism. She was told to rest more, which anyone who is in school and working does not want to hear that they need to slow down because making time for that is near impossible but then other things started to happen...
Sannah started to lose a lot of weight because eating became difficult and her appetite diminished. Sannah also was starting to experience fatigue and muscle weakness in her arms. Her endurance was slowly dwindling that even holding her arms up long enough to style her hair was becoming problematic. She became quiet and secluded, not talking as much because of her slurred speech and not smiling anymore. These were all red flags for Sannah and her mother but when Sannah started falling down unexpectedly they knew something was wrong. Sannah even stopped holding her younger nephews out of fear of dropping them.
Sannah went through a complete battery of tests trying to find answers but it wasn't until she mentioned to her doctor that when she is sitting down and people are standing up her head becomes heavy and that's when "a light bulb went off above her doctors head" (Myaware, 2018) and she finally received her diagnosis in July of 2014. Sannah began the journey to recovery which caused her to have to leave school and work to focus on resting and getting her strength back. The time spent slowing down in hindsight was so good for her, she realized that focusing on herself and her relationship with her family was most important. She never took time for herself and was instead going at the speed of light running back and forth between school and working with no breaks in between.
In February 2015 Sannah had her thymus removed, a common procedure for people with MG. She said that she wears her scar proudly like a badge of honor. Sannah has gotten back into the gym and even started boxing, a sport that she now competes in despite her visual impairments with albinism and her MG. In February of 2018, Sannah started a class for women from minority groups as a part of her job with the Human Appeal charity. The fitness group is held at a boxing-type gym that is closed off to the public during the time frame of the class. The secludedness of it helps the women feel safe and it also gives them an opportunity to take off their hijab if they normally wear one. It also gives the women the freedom to wear what they feel most comfortable in, in order to work out without fear of ridicule or feeling self-conscious.
Sannah does not let her condition(s) stop her or slow her down but she does understand that just like anything in life, it is a balancing act. I chose this source because I was so intrigued by her ethnicity, Scottish Muslim and because she was right around my age. I love what she is doing for women in her community and giving them a safe haven to shed their traditional headscarf and feel empowered and connect with similar women.
Until Next Time,
Sam the Student
References:
Myaware: Fighting Myasthenia Gravis Together. (2018, January 05). Sannah's Story. Retrieved from https://www.myaware.org/blog/sannahs-story
Rutherford, N. (2018, September 28). 'I'm a Muslim woman, I'm visually-impaired and I'm a boxer'. Retrieved from https://www.bbc.com/news/uk-scotland-glasgow-west-45550555
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| Retrieved from Sannah's Facebook |
Sannah started to lose a lot of weight because eating became difficult and her appetite diminished. Sannah also was starting to experience fatigue and muscle weakness in her arms. Her endurance was slowly dwindling that even holding her arms up long enough to style her hair was becoming problematic. She became quiet and secluded, not talking as much because of her slurred speech and not smiling anymore. These were all red flags for Sannah and her mother but when Sannah started falling down unexpectedly they knew something was wrong. Sannah even stopped holding her younger nephews out of fear of dropping them.
Sannah went through a complete battery of tests trying to find answers but it wasn't until she mentioned to her doctor that when she is sitting down and people are standing up her head becomes heavy and that's when "a light bulb went off above her doctors head" (Myaware, 2018) and she finally received her diagnosis in July of 2014. Sannah began the journey to recovery which caused her to have to leave school and work to focus on resting and getting her strength back. The time spent slowing down in hindsight was so good for her, she realized that focusing on herself and her relationship with her family was most important. She never took time for herself and was instead going at the speed of light running back and forth between school and working with no breaks in between.
In February 2015 Sannah had her thymus removed, a common procedure for people with MG. She said that she wears her scar proudly like a badge of honor. Sannah has gotten back into the gym and even started boxing, a sport that she now competes in despite her visual impairments with albinism and her MG. In February of 2018, Sannah started a class for women from minority groups as a part of her job with the Human Appeal charity. The fitness group is held at a boxing-type gym that is closed off to the public during the time frame of the class. The secludedness of it helps the women feel safe and it also gives them an opportunity to take off their hijab if they normally wear one. It also gives the women the freedom to wear what they feel most comfortable in, in order to work out without fear of ridicule or feeling self-conscious.
Sannah does not let her condition(s) stop her or slow her down but she does understand that just like anything in life, it is a balancing act. I chose this source because I was so intrigued by her ethnicity, Scottish Muslim and because she was right around my age. I love what she is doing for women in her community and giving them a safe haven to shed their traditional headscarf and feel empowered and connect with similar women.
Until Next Time,
Sam the Student
References:
Myaware: Fighting Myasthenia Gravis Together. (2018, January 05). Sannah's Story. Retrieved from https://www.myaware.org/blog/sannahs-story
Rutherford, N. (2018, September 28). 'I'm a Muslim woman, I'm visually-impaired and I'm a boxer'. Retrieved from https://www.bbc.com/news/uk-scotland-glasgow-west-45550555
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