Please read and, if you are able, consider making a tax-deductible gift (or buy a shirt) to this amazing organization. The fundraiser is still running until June 15, 2024.
I thank you deeply in advance!
Imagine that you are a child and you are 8 years old. Your parents tell you that you have this thing in your blood called “cholesterol” and you have way, way, way too much of it (about 7 times more than everyone else). They talk to you in terms in which you can understand: “Honey, you know how grandpa cannot walk because he had that brain accident (a massive stroke)? You know how grandpa needs to check his blood levels every month and his blood pressure with the machine every day? Do you know how he will get to spend all of his days in bed for the rest of his life? Well, you have the same problem as grandpa. But all this happened to grandpa when he was 50. All of this and more will happen to you when you will be 25.”
They tell you that you have a disease that gets passed on from generation to generation, called “familial hypercholesterolemia”, but that your kind of it is “much, much more severe and more rare” (“you’re probably one in a million people” - they say) than your dad’s, and your grandpa’s (dad’s father), and all of dad’s uncles and aunts.
You don’t really understand, and you don’t really think that 25 is really that soon. You are 8 now. You got plenty of time to grow and be an adult by 25 and do so many things, go to college, even!
Then, it gets worse: your parents are desperate and they keep taking you to doctors to figure out what to do with you, to treat you somehow. The doctors tell you not that you will be paralyzed like grandpa, but that you will be dead by 25. Others are even more grim, they foresee that you’d be dead by 18.
And you feel special, in a way, like a kid would, but as you age you become more curious (not to mention desperate, too): why doesn’t someone do something to fix this? Are there any people out there that have exactly what you have and did they die at 18 or 25? Did they get married, did they have kids? How did they survive this? Anyone?!
And for years, you don’t meet anyone who has what you have, outside your own family. But none of the people in your family are this “rare”, nor this “severe”.
For years, you don’t have access to all the new medications, because you either live in the wrong country, or you go to the wrong doctors who don’t know to give them to you.
When you go to doctors and you tell them that you have “familial hypercholesterolemia”, they write down “genetic dyslipidemia” which confuses the heck out of you - but they don’t have the right disease name in their medical records, so they use what they can. You have a disease that is so rare, there is not even an accepted proper name for it ....
Over the years, I had to find my own way through the maze of various drugs most of which didn't work, and the armies of specialists that tried to treat me but most of whom failed. But then in 2016, right after I had my 13-hour open-heart surgery which fixed my heart after the cholesterol had wreaked havoc on it for 40 years (getting on some treatment in my early 20s allowed me to cheat death and I made it kicking and screaming into my 40s), I learned about The Family Hearth Foundation.
This is where not only did I learn more than I had ever known before about my disease, but I also met my tribe - people that not only had “familial hypercholesterolemia”, but people who had the same form of the disease (the “more severe and more rare” kind), the “one in a million” people. I have learned from them how they have lived and treated it. I finally learned the proper name for my disease (“homozygous familial hypercholesterolemia”) which taught me that not only my dad but also my mom has this disease - something we didn’t know till I was 40. Learning about genetic testing through the resources at The Foundation, I asked my doctor at the time to allow me to be genetically tested and the result of that lead us to my mom’s diagnosis, and later to my sister’s and nephew’s diagnosis, too.
I learned about treatments that are designed for my disease particularly and I have learned from others how they felt after following the different treatments for it. I learned about the side effects, the do and don’t, the gotchas for each treatment. I learned how expensive, or painful, or full of side effects they are. This was gold to me - having a real-life connection with people like me.
Through the association they have with specialists, medical professionals, researchers, geneticists, the Family Heart Foundation provided me with science and facts about my disease. Through their membership and community reach, they have given me a family - people like me who are fighting to survive every day. Listening to their stories, meeting them would not have been possible without the open forum that The Family Heart Foundation provides tirelessly through their Ambassador programs, through their Summit events, through their HoFH gatherings, through their webinars and interviews, and through so many more resources.
They save lives by advocating for things like early screening of all family members, they save lives by finding the right medical resources for people that are newly diagnosed and don’t know where to turn. They educate family doctors, nurse practitioners how to diagnose patients early so they can prevent major events like heart attacks and strokes which are the most common complications from unmanaged cholesterol levels. Ultimately, they have fought for our disease to be recognized by the proper name: through their tireless advocacy, we finally got an ICD-10 code of our own in 2016. So, now we are real. In every way.
They even bring together small, confused little children like I was, that go through tough treatments at an early age and they build a community for them and their parents, too, so they would feel less alone and less confused.
FH is often an invisible disease until something terrible happens. It is estimated that one in 250 people (and someone in their family, too) have it and yet about 70% of these people don’t know they do. Some of you have four or five times more Facebook friends than this, so you do the math. The Family Heart Foundation won’t rest until every person is diagnosed and has a plan towards health, if they choose to.
It is because of all this and more that I support The Family Heart Foundation every year. I am proud to be an ambassador for this organization that gives such hope to droves of hopeless individuals who are scared and lost when they first learn their diagnosis.
Words can never express how grateful I am for everything they do and for the appreciation I have for the impact that they have had on so many of us, including on my own family.
Thank you!
Here’s the link to their current campaign, if you would like to support a cause that saves lives and builds hope.
No comments:
Post a Comment