RARE AND PROUD

By michelle, Granulomatosis with polyangiitis, Mexico, February 14, 2018

Me last October

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. 

 

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Ivan Borshchevsky, a KS patient Ivan Borshchevsky, a KS patient

Puberty? I've never heard about it. My life with Kallman syndrome.

Ivan Borshchevsky, Kallmann syndrome, Russian Federation, February 23, 2018

I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn't invite me to their games, so I preferred books to humans and became a real bookworm. That...

Living Life to the Fullest with 2 Stoma Bags and a Rare Disease Living Life to the Fullest with 2 Stoma Bags and a Rare Disease

What It Is Like Having a Rare Disease

Rachel Jury, Pure Autonomic Failure, EDS, POTS, United Kingdom, February 17, 2018

Here is my account of living with a rare disease; Pure Autonomic Failure where my bladder and bowel failed to function normally. Now I have a permanent ileostomy and my bladder was removed and a urost...

CORTO MIO FRATELLO ENGLISH SUB LR CORTO MIO FRATELLO ENGLISH SUB LR

Mio Fratello ( my brother) by Giulio Base

Edoardo Giorgio, Hereditary spastic paraplegia, Italy, February 13, 2018

When Edoardo was one year old we saw that something was wrong. He could not walk and when he started walking at 18 months, he walked on tiptoe. We began going to many different doctors and after two y...

UNC Gallery: What Does Being “Disabled” Mean to You? UNC Gallery: What Does Being “Disabled” Mean to You?

Teacher with a Robot Leg

Megan Gress Madlon, Tibial hemimelia, unilateral, United States, February 1, 2018

I was born missing my tibia in my right leg, so my leg was amputated when I was 16 months old. By the age of 2 I had my first prosthetic leg, and I began walking and learning to do all I wanted to do!...

X

Share your story




(To find the english name and more information about your disease, click here)