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  1. Aduiavas Ida

    February 29th - Rare Disease Day

    Yes, I've met some people who had to have a real fight with their doctors, not just to be taken seriously, but to make the doctor understand that they are in pain. One of my best friends was told for years that she had a mental illness. She probably have that too. But it took them years to...
  2. Aduiavas Ida

    February 29th - Rare Disease Day

    Yeah, Prednisone is a life-saver, but it also ruins your body in many irreparable ways. Even if I could miraculously stop taking Prednisone today (not a good idea) my body wouldn't return to "normal". I'm glad you were able to save your eye, btw. That sounds really scary. :hug
  3. Aduiavas Ida

    February 29th - Rare Disease Day

    I also have a rare disease This one My rashes aren't nearly as bad as those pictures show, but most of the rest fit. I also had the joy of it mostly affecting my lungs, so it causes my lungs to slowly deteriorate. When I got the diagnosis in 2011, they were already at 40% capacity. Now they are...
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