Rare Disease

*I am a part of the 3.5 – 5.9% of the worldwide populate that lives with a rare disease. Thankfully, I have a family and small friend group that supports me in ways that they can. I still struggle socially, financially, physically, and emotionally because of my rare disease. If there was a higher level of medical research put into rare diseases, a higher quality of care that I could access, and less of a stigma surrounding rare disease, I believe that the weight of having a rare disease may be lightened.

I began showing symptoms of Idiopathic Intercranial Hypertension during my second year of university. My major symptoms were a unique migraine that never disappeared, ringing in my ears, blurry vision, and brain fog. My family doctor prescribed a higher dose of antidepressants. Eventually I went blind. It took two years of worsening symptoms to get my official diagnosis! As a studying nursing student, I had already self diagnosed, and I was fiercely self advocating for myself and fighting for adequate care. I argued for doctors who would just listen and hear me out, I fought for scans and tests, I made phone calls to ensure I would not be left behind. Unfortunately, this is the reality for most rare disease patients. We must research our disease and fight for our own care.

There is so little medical research done for so many rare diseases, and I find that there is also very little support! It is my goal to fight for awareness and notice this gap in the medical field. I also want those who have a condition like IIH to know that they are not alone! I think AWARE is creating a beautiful opportunity for many alike to connect through differences and similarities – like for those with rare diseases.
This necklace is a reminder to contine fighting for a cure and also a reminder that no matter how lonely I feel, I am not alone!” @chronicallymoving 

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