The story of Paulina

My name is Paulina (better know as Pau) I’m living with an Ultra-Rare Disease called Fibrodysplasia Ossifican Progressive better know as (FOP)
When I was 18 years old I was misdiagnosed it was until I was 23 years old when I got diagnosed with FOP. I was misdiagnosed with Tumors or Cancer, everything in my life changed in the moment, because of it, I had 5 surgeries on my hip, without even know what really was happening in my body.
When I got my diagnosed with FOP and hearing there’s no cure or treatment, I feel hopeless, all of I could think was what my life will look like now with this illness, because I can said I had the perfect childhood any kid could have, FOP usually gets diagnosed when you’re 5 years old or you start with flare-ups.
FOP was sleeping on my body, it was until I was 17 years old when I had a fall in PE class, and a year later I started to have trouble doing certain tasks.

I really had a bad experience with Drs here in USA because i got diagnosed in Mexico and I came back home with the diagnostic but drs from here didn’t want me to help me I went through several doctors just for them to tell me go back to the place you were diagnosed, I can’t help you with it, I’m not familiar with it. I stopped look for more doctors, because I didn’t want to hear it again I’m not familiar with your illness, after months I fought with my insurance, until a nice lady told me I understand what you are going through, she told me you need to go to a Genetic Doctor and from there I feel I found peace.
Also to contact a FOP Expert was hard, but after 2 years trying finally I got the chance to meet one of them.
After knowing about FOP with the help of family and close friends helped me research about this illness, my mom and I did found a page called IFOPA, everything was in English it was hard to understand but little by little I did my best to understand more about FOP. After years looking, reading, thinking and meeting people with the same illness I decided to open up a Facebook Support Group called Ifopers Latinos 💚💙
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