Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
“Let us not look back in anger, nor forward in fear, but around in awareness.” (James Thurber) It’s very easy, if you or your child has been diagnosed with FH to look back in anger (“Oh, no, why did I get dealt this crappy hand when the gene pool was divvied out?”). It’s just as easy to look forward in fear. In fear of dying young, or being debilitated for life because of a massive heart attack or stroke. The fear of limitations, of not being able to afford medical care, and of not being able to fulfill your dreams. I have always wanted to share my FH experience to hopefully let people like me know that they are not alone. This year, I have decided to take this venture of sharing my story a step further: I have become an “official” Family Heart Foundation Advocate, after I attended their training in Washington, DC (https://livingwithfh.blogspot.com/2017/06/when-i-met-my-extended-fh-family-and.html) Most of the things I have heard there, I already knew about the disease and what life with it can be. The one thing that really shocked me and will stick with me forever was the number they shared of how many people have not been diagnosed with this disease. That number is 90%. Just think about it, and take it in. If you have 10 people in a room and all of them are FH people, 9 (nine!) of them do not know they have it. They can drop dead at any point of a heart attack or a stroke and they could have prevented it, had they known and been on the right medication. 90%! The only thing they need to survive is awareness. And we, those of us who know, can, or must do something about this, I feel. I have always been a shy person, socially. I do fine in one-on-one interactions, but in front of crowds I wish my stomach would start chewing myself in alive rather than leaving me present to face the world. So, when I signed up to be an advocate, and get in front of people, meet strangers, be in uncomfortable situations and speak to people I’ll never see again about this disease, it was like I was drugged up and following a day dream: what in the heck was I doing?! It seemed real, but barely. Who did I think I was to think people would listen to me?! I still think that, and yet, when given an opportunity to be out there and share a little bit about FH, I am taking it, nerves and all. Today was such an opportunity. I live in Utah, and one of the most anticipated events of the summer here is a cycling race, The Tour of Utah (https://en.wikipedia.org/wiki/Tour_of_Utah). One of the teams, the BMC Team, has partnered with the Family Heart Foundation to create awareness about our disease. I was asked to be present at the race, and give the partnership a voice in social media. I have never done this before. I was a wreck days before the race. But I didn’t say “no”. That 90% number has been hovering over my head like a bad, heavy cloud. I am thinking: if just one person out there on the field sees my cool t-shirt with the Family Heart Foundation’s name on it, if one person reads one of my tweets, or Facebook, or Instagram posts and goes and reads about “What the FH?” this is about, well, there are your four more people in that room that will know what it is and maybe get tested for it. And maybe they are saved from that short-lived life, or debilitating existence. Maybe. We hope. So, I went through with it. The experience was great, mostly for me, but I hope, ultimately for the Family Heart Foundation and for someone out there who got to see me and get exposure to the FH concept. It pulled me out of my comfort zone, I did have to talk with strangers, and I did have to ask them to take pictures of me, let me ride in their event car, and make conversation with me. And I talked about my story with at least one of them. A couple were listening in. And I messaged it, shyly, but surely, on all my social avenues. And the word spread, as others shared my posts. My husband was there, too, loyally wearing his FH shirt, and cheering me on. He pointed out how ironic it was that I am representing my disease through a team of cyclists, when I cannot even ride a bike. And that is the honest truth. I can’t. But life is beautiful because it’s strange sometimes, and you can’t deny yourself experiences because of some silly incongruities, right?! The people on the BMC team were so kind, accommodating and inclusive that I immediately felt at ease. The team was gracious to come out and take pictures with us, even if they were, probably, exhausted, after racing for six days (this was their last), at very high altitude and in desert heat that has hovered around 90’s and 100F during the past week. We met them right next to their team camp, where their team bus and cars were parked. We “met and greeted them”, then took some pictures, and off they went. Their cars get to follow the cyclists for the whole race with equipment, in case some emergency happens and they need to fix a bike, or replace it, I guess. The personnel in these cars work as hard (they think not as hard, but …) as the bikers. They follow every move of every one of their team mates who are riding on their phones and iPads, and they must be prepared to sprint forward if their team needs them. This means weaving in and out of the caravan amongst all the other bikers and cars that are ahead of them at very high speeds, and with people standing on the curb watching inches away from the course. It was fascinating! I felt like I was riding in a Formula One car, only better, because we were running red lights throughout the city, and jumping over speed bumps with our eyes on the target: our team, and the finish line. The stage had several laps today of the same route through Downtown Salt Lake City. My husband and I got to ride in one of their team cars on the first lap. It was such a fast pace, and I was so excited to be witnessing this breakneck experience that I forgot at times to turn on my video camera to shoot some of the most interesting parts of the lap. It was a huge learning experience for me, just about the sport, and about this kind of competition, so I am doubly glad I went: for the benefit of getting the FH name out there, and to enhance my horizons from this new understanding. We learned about who they were (although they are called “BMC Switzerland”, they have guys from Italy and America on the team, too), that they had already won one of the stages of Tour of Utah (that is what a day of racing in a tour is called). They also won the team classification overall, meaning, that over all the stages, their time together as a team was the best of any team in the competition. Go, BMC! As a heart patient who struggles to walk up a flight of stairs at normal speed, I was humbled by all their hearts and what they could do to carry them on through this incredibly taxing exercise. I was also impressed by all the technology that the event displayed: everything, from the monitors hooked up to the cyclists’ chests which were connected to the screens on their handlebars, from the iPad+iPhone+radio system in the team’s car, from the many screens that displayed every second of the race to the helicopter that was taking aerial shots – everything was tech explosion. After our lap was over, we cooled off in our air conditioned car till the race closed and we sent feeds to the social world about what we had just witnessed. To those of you out there who are considering being an advocate for FH or for any other cause, I would advise you to just do it. Whatever you do, no matter how little or big, just remember: a pair of eyeballs from somewhere will fall on you and someone else will be, through you, one experience richer. Just sharing who you are, your thoughts and what you see every day through the eyes of an FH person will make this world our richer, more knowledgeable, and ultimately fuller. That fear of the future will be a little bit less for all of us.
To view original post visit: https://livingwithfh.blogspot.com/2017/08/fun-with-purpose.html
Blog Post by A.W. About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.
2 Responses to “Fun with a Purpose”
Cat Davis Ahmed
Thank you Alina!!! This was great. I’m so glad you were there representing the FH Foundation and the whole FH Community. – Cat
Thank you so much for sharing. I have so much to learn from you.