I think back to that day more often then I probably should, not because it was like any other day, but because it should have never been found. You see after going to the NIH every year for 13 years the doctors started backing off on having me come up as often. That made since to me as nothing was ever different. In June of 2011 the doctor never called to arrange an appointment, so I just left it be. By mid July I kept telling myself I need to get in there, even if it is just for a day. So I called the doctor up and he asked if I could come the next week and sure enough I did. I told me when I got there that it wasn't his intentions for me to come in this year as he saw no need to do more tests. As we soon found out we were both glad I made the extra effort. It is all those little things that had to fall into place at the perfect time in order for me to be diagnosed anyway. Just mind blowing to me, then I step back and think of all the things that just have to go perfectly in order for them to have ever happened.
After being diagnosed I went on a crazy person spree. I kept telling myself I was going to find someone out there with this disease before I die, and at that point in time I felt like that time could be any minute. After many hours on the internet I finally gave up looking as there was no one to be found, I guess it was just to rare of a disease I kept telling myself. So what do I do? Get on Facebook. Thank God I did. As a last ditch fling I typed in familial hypercholesterolemia into the search bar of Facebook and voila! there was a group. Who knew something good could have come out of Facebook? Again it is one of those moments of where would I be now if I just decided to give up and just go to bed. In joining this group I got connected with now some of my best friends and who in turn connected me with two mega pharma companies.
These two companies have opened the door to so many opportunities in my life. Never would I have had the chance to have my picture hang from the rafters of a multi-billion dollar companies headquarters...
Or be made into posters that were shipped all over the world for all to see...
Or be on the cover of Aegerion's 2012 financial report, speak at the capital for NORD, or be on a pamphlet about Juxtapid.
Believe it or not I still find it weird seeing my face on all this stuff. It is just....creepy to me. For the longest time I always kept this disease to myself and now all the sudden I cannot travel anywhere to speak about FH without there being a picture of me hanging somewhere. Though it can be a little weird sometimes I will have to say all the experiences I have had have been so amazing. I have had the awesome opportunity to speak in front of the FDA twice. I have been featured on a number of websites and news articles. For me it is all about getting the word about FH out there. It wouldn't matter if it was my name or any one of the other folks out there suffering from this disease, just to raise awareness and help save lives is why I have been doing what I have been doing. Believe me I hate public speaking and I wouldn't just do it for no reason. Part of the gig when traveling is me pretty much laying out my life on a silver platter for all to see and hear, The good and the bad, the ups and the downs, the happys and the sads. Below I have added a few URL's that I pulled off Google really quick. I am sure there are more floating out there somewhere but I just grabbed he first few. One is a YouTube video of my family and I talking about FH, others are about the Boston Marathon that was run on behalf of me and the disease, others are newspaper articles and magazine articles.
Again the part that amazes me is how in the world I got from where I am today. We have all been to that point in our lives when we get bored and are just going through the motions. Well when God throws a wrench in your boring life, look at it as a sign to go do something awesome with your life. Don't just sit back and let the opportunity go by, make the most of it and make a difference in someone else life alone the way.
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