I have Pompe, Pompe doesn't have me

Hi my name is Sean Kelly. I am 44 years old and live in Long Island, N.Y..  I was diagnosed in November of 2016 with Pompe disease after approximately a 10 year journey to find out what was going on with. I started to notice something was wrong when I began having problems going up stairs as well as having problems standing after sitting in a chair or anything that was low to the ground. I, like most other adult Pompe patients, went to several different Dr's and had dozens of test done before finally finding out that I had Pompe. I will never forget when I received the phone call from my Dr telling me they finally figured out what was going on with me. I went through a whirlwind of emotions, first I have happy and excited because after all these years I finally had a diagnosis and knew what was going on, then I was scared because I didn't know what to expect and didn't know anything about pompe. I then decided to do some research and turned to Dr. Google, and read the article that probably every other Pompe patient has read which states we will die within 3 years of being diagnosed. I immediately began to cry, thinking of my family and how would I tell them the news. I became depressed at first but then finally met with my Geneticist and spoke about ERT and felt a little more positive about things. I decided I wanted to learn as much as possible about this disease and educate people about it and bring awareness to it. I have found that there are very few Drs. that know anything about Pompe, some or more open about it and admit they don't know about it, but I have found a few that because of their ego will pretend they know about it but really don't. I have done walks to try and raise money to help find a cure Pompe. I continue to try to advocate for Pompe as much as possible to raise awareness.  They say that Pompe disease is extremely rare and it effects 1 in 40,000 people, but who knows how many other people are out there with Pompe and aren't aware. I may have my days that I feel horrible and am in pain but I never feel too bad to advocate for Pompe. I may have Pompe, but Pompe doesn't have me.