In Romania, where I was born and raised, we have these special days called “name days”. Typically, when we celebrate some event connected to one of the saints celebrated by our orthodox calendar, people named after that saint get to celebrate a second birthday of sorts, only it is called a name day. The celebrations are similar to those for your birthday - presents, elaborate meals, flowers, balloons, cards, visitors or people going out to eat.
Not everyone gets a name day because there are plenty of names that are not connected to any saint. Mine is such a name. I grew up with a family where everyone but one other person, my aunt, and I had a name day. This did not make me left out or special (or un-special). It was what it was, as they say.
But what did make me feel special was my FH diagnosis which I shared with my dad and his dad’s side of the family. At that time, we only knew about dad’s diagnosis. We almost never suspected mom. My grandfather was bedridden from a stroke when he was 54 and I was 4 years old. My favorite play buddy was not able to take me to the park anymore, nor to the pastry shop. Dad knew he had the disease all his life and he was on medication for heart disease pretty much as early as I can remember him. I found out about mine when I was 8. We knew this runs in the family, always, and this did make us “special”.
We, and we alone, got what it felt like to go through the day and the year - the constant obsession with the numbers, the diets, the monthly and yearly check-ups, the lack of energy and fatigue due to a sick heart and a lazy liver.
We didn’t know anyone around us outside of our family that had it. It was like our secret society.
Part of it was accurate (we were somewhat rare) but part of it was just from the fact that people didn’t screen for cholesterol until older ages or until there was some sort of a reason to worry (like a heart attack or a stroke).
I never heard much about FH outside of my doctor’s appointments. I truly believed, especially as a child, that we have this unique, rare affliction that just made us, in our family, special. We didn’t celebrate it - it was something that both made us feel unique but also cursed, a strange likeness to a sweet sin, if you will.
All these years later, I now know a whole tribe of FH folks and they have become for the past 14 years since The Family Heart Foundation started to exist my extended family. They all feel just as special and just as connected to me, through our shared experiences, as my own family. We also have The Family Heart Foundation to thank for establishing The FH Awareness Day, celebrated this week and every year, on September 24. We gather, virtually or in person, to learn about our condition, about our blood families and how to manage it for ourselves and for them, and we celebrate the successes of The Foundation in the past year, as well as the advancements in medicine that have allowed some of us to thrive many years after our original “expiration dates”, or survival estimation ages when we were first diagnosed.
Even if we don’t gather to spread the word on this day (most of us do it throughout the year in one way or another), we feel a little bit more special and a little bit less alone on September 24. We know what we have makes us tougher and appreciate life more.
FH is a family disease - if you are diagnosed with it, good chances are there is at least one living person in your family that also has it. If you don’t know who and you are reading here, find out who and share what you know with them, or go to The Family Heart Foundation’s site and find out more. All it takes is one prick of the finger. If you know of anyone in your family with high cholesterol, a heart event or a stroke before their 60’s, check your LDL and your LP(a) numbers.
When I first started on this journey, the reality of what FH was was what my grandfather and father were going through - strokes, premature aging of the arteries, then premature death in the case of grandpa and his brothers and sisters. The prognosis for me who had the “more severe form of FH” was not very good: “she might make it to 25 years old, but 18 is more realistic”, one doctor said.
Nowadays, the possibilities to live a healthy life, free of cardiac or stroke events sometimes seem endless. There are so many people interested in crafting new treatments and therapies, so many people more aware and pushing for early screening and early actions, so many therapy options that are catered, it seems, to exactly what our own unique bodies can withstand. There are fewer and fewer compromises in treating FH and more benefits. I am 51 today, as I write this, by the way. My journey was not easy and I mimicked the family heritage (heart attack at 40 and stroke in my late 40s), but I am still here, still living a full life.
The Family Heart Foundation, an organization I have been proudly part of as an ambassador for 9 years now, has so much to do with these changes. With every year that passes, they find more and more people with FH; they are making more and more families aware that a genetic heart disease or a stroke diagnosis is not just a gene fluke, but a condition that has a name and a treatment. They are arguably responsible for me finally receiving my correct genetic diagnosis of Homozygous FH at the age of 41 which opened up doors for therapies I was not qualified for before. With my own diagnosis, we also realized that my mom also has had FH all her life. We then found out that both my sister and her youngest son also have FH.
The Foundation attempts to make every FH family thrive instead of curl up and lose hope. It is up to each person to stay aware, but it’s a huge step for everyone to know you have someone in your corner. Just visit their site (https://familyheart.org/) and see for yourself.
This week, I celebrate our uniqueness. I celebrate every single person in my own family who has this condition and I cheer them on in their own journeys. I am also grateful to The Foundation for this day of awareness and for giving me my bigger, more diverse, FH Family. I celebrate every single person in my larger FH family - you have all inspired me and you humble me every time I hear one of your stories. Keep fighting and keep thriving!
Happy FH Awareness Day, everyone! May you all have smooth journeys and lots of happy years ahead!
