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What It's Like to Face Each Day With Rare Disease

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The day I got a diagnosis for my rare disease I cried tears of joy, because I felt acknowledged for the first time; little did I know that the journey that was about to follow would be filled with chronic pain, disability, and the weirdest symptoms.

If I had known maybe I wouldn’t have fought so hard for a diagnosis…. This is what can happen when you get diagnosed with a rare disease and there are no proper treatments, and a cure hasn’t been found yet.

You don’t get treated properly, because the reality is, no one grants money for research for the 5,000 people worldwide who live with the disease.

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