<div>After years of chronic illness, and multiple hospitalizations, doctors still don't know what is wrong with me. The best doctors at Vanderbilt are working on this, but so far, all they have been able to say is that I have "an extremely rare autoimmune disease" that they think I was born with.
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<div>I am 100% "allergic" to UV rays. 30 seconds of sun exposure would put me in the hospital with blistering lesions, known as Stevens-Johnson Syndrome. But it's not just the sun - several types of bulbs also put off UV rays, including fluorescents, so I can't be exposed to them either. Anytime I leave the house, I have to be completely covered in UV protectant clothing. It's very difficult to go anywhere - even doctor's appointments.
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<div>Each SJS episode is worse than the last, and at this point, a minute of sunlight could kill me. I've had countless reactions throughout my life, but the doctors never took it seriously, until it put me in the hospital. These repeated allergic reactions have done major damage to my immune system, which has led to 9 other diagnoses, including Ehlers-Danlos Syndrome, Neuropathy, Dysautonomia, Hashimoto, Erythromelalgia and Raynauds. The doctors think that when I got Covid-19 in 2021, it destroyed what was left of my immune system and allowed this unknown autoimmune disease to take over.
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<div>I am too sick to work and have retained a disability attorney to help me fight because I have been told I will be immediately denied since I'm only 36. I have drained my savings account and Roth IRA to cover my monthly expenses, including medication and 4-6 doctor's appointments per month. I also need medical supplies, like UV protectant clothing, and mobility aids for my EDS, on top of my regular bills to live. Unfortunately, I have no support from family, which is why I am at this point. It is only because of the generous donations that I have received, and the incredible support I have found online, that I have been able to keep my home, my car, even my animals.
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<div>My entire world flipped upside down 3 years ago—the first time the sun put me in the hospital. Since then, I've done my best to TRY to continue having a life despite my disability, but that is really hard to do when you can't even go outside...
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<div>If you've read this far, I already appreciate you more than you know. ❤️
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<div>Every day is a struggle. Every hour is exhausting. I genuinely don't know how much longer I have but I'm doing my best to make the most of it. <strong>A little kindness would mean alot.</strong> ❤️
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Allergic to UV Rays - Every bit help

Allergic to UV Rays - Every bit help

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