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RARE AND PROUD

The story of Michelle

Is estimated that 3 out of 100,000 people get affected by “Granulomatosis with polyangiitis”  I got so lucky that i´m 1 of those 3. My name is Michelle, I´m 22 years old and my rare autoimune diseases causes the inflammation of the blood vessels in my nose, sinuses, throat and lungs. It took 5 years and an average of 10 doctors to finally get diagnosed. I´m still getting along with it before i knew what it was every doctor i went after seeing my symptoms that are actually similiar to asthma, symptoms, diagnose me as asthma, but nothing really worked so i went doctor after doctor until one day i said i was going to the last one I was ready to really give up I couldn´t heard one more asthma and taking the same meds, but that last doctor was the first one that said it isn´t asthma. 

When I finally knew what I had i felt happy and sad, I finally knew the problem with me but it is so much worse than i expected, and it´s the worse thing to explain it to someone and get them to really understand the problem, I have learn to avoid explaining it or just say I got some weird kind of asthma, because people sometimes see our kind of diseases and symptoms like excuses or think you want to get the “oh poor thing she´s sick and calling for attention”.

I´m taking a bunch of meds 7 pills a day and my body feels weird I get tired all the time and i´m on the process of getting some meds by infusion because my other meds are not working. I´m trying to cope with all the changes that my body is going through, I gain a lot of weight, i can hardly do exercise, I get really tired some days, go near people smoking is a DON´T, so my life gave a really big turn with all of this and it´s even worse seeing how my parents react to it and how hard is to them seeing me like this, my friends don´t really get it, I really wish i could be out doing things people of my age do and enjoying but here I am learning to live with this. 

One time a read that things happen FOR something, I´m still figuring FOR what this and FOR what me, in the meantime getting people aware of it is the mission.