The story of Laura
I am 40 years old and was officially diagnosed with relapsing polychondritis about 20 years ago. I received my diagnosis from my ENT by him handing me a scrap of paper with relapsing polychondritis in that irritating almost impossible to read doctors handwriting and he simply said “this is what I think you have, go look it up on the internet”. That was it, there was nothing more he could tell me or do for me. So l looked it up and was horrified. What little information I could find said that I would most likely be dead in 8 years. So there I was in my early 20’s wondering what I should do? It was a very scary time in my life. I struggled through the next 7-10 years until I finally found a rheumatologist that was willing to help me. She said from the start “everything that I do with you is an experiment. I just want to be clear about that upfront”. At that point I didn’t care, I would gladly do anything if it meant that it might make me feel better. Our experimenting is going pretty well, I’ve had my ups and downs. There have times when I’ve felt like this disease has gotten the best of me, but I know now that I have someone in my corner. Someone willing to listen and try their hardest to help me get better. That’s why I support rare disease day. I want others with rare diseases to know that they have someone in their corner, willing to fight for them.
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