The Effect of a Rare Disease on Mental Health

Superficial Siderosis 2015-2016 Getting a diagnosis was the first step. After about a year of health deterioration, multiple hospital admissions and tests, I was physically and mentally exhausted. I missed so much time at work and was really struggling to sleep at night due to the endless symptoms. The anxiety was becoming a huge issue for me. What will happen next? Can things get better? I had been in generally good health for the past few years, so this was all kind of new to me. Having recently started a new job which I was still trying to get to grips with, my health plummeted. Firstly, my hearing suddenly went in my right ear and had a massive impact on my social life as I was a guitarist in a rock band. Losing a hobby and passion was one thing. Still, the fact it had happened only a few months

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We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may accompany this disorder’s progression in moderate to later stages. It is comforting to realize that not every superficial siderosis patient will experience cognitive issues or behavioral changes. Emotionally, a select group of superficial siderosis patients will be fighting Mr. Toad’s Wild Ride every single day. Our community has learned how movement, gait instability, speech impairment, uncontrollable eye movement, and swallowing problems may manifest as the result of superficial siderosis induced damage to the cerebellum. Schmahmanns’s Dysmetria of Thought is a theory that suggests the cerebellum also plays a crucial role in the flow between thinking, actions, feelings, and interpersonal interactions. …the cerebellum regulates not only the rate, rhythm, force and the accuracy of movements, but also the speed, consistency, capacity, and appropriateness of cognitive processes. Jeremy Schmahmann MD, Director, Ataxia

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Thread of Depression

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Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, ataxia, and myelopathy are all life-changing, but the single most shared symptom members of our superficial siderosis community battle is depression. Not everyone will fall head first into a pit of despair, but the fight for your health wears down even the most optimistic person. As your physical well-being slips, stressors begin to take over as your quality of life slowly begins to change.  If you’re one of the lucky few to develop anosmia enjoying a great meal is now a memory. Conversations become impossible to follow leaving you to feel isolated. Going to work is a nightmare. Vision problems rob you of your ability to drive. The bonus? If you live in an area without access to public transportation, say goodbye to your independence. Stress And Depression Extreme chronic stress is known to evolve

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