Friday, September 23, 2016

In Honor of FH Awareness Day. And Because Media Lies.

Tomorrow is 2016 FH Awareness Day and in honor of this, I have a confession to make. To some folks this won't be any kind of news, but to others it might. I have not previously mentioned this on this blog: I have FH. That is short for 'familial hypercholesterolemia' and a lot easier (and faster) to spell. You can google it and choose your own source to find out what exactly it means, and I encourage you to do just that.

In short, it's a genetic disease that causes very high levels of cholesterol in your body. It does not matter what you eat or what lifestyle you lead; because of this genetic mutation, your body (your liver, most precisely) produces more cholesterol that needed. And there is no mechanism (as in normal people) for your body to get rid of the extra fat, so instead, it stays in your blood stream, and over time, it deposits inside arteries, or your organs' surface (like your liver and pancreas, or even inside your eye), or sometimes on your skin, in big, white lypomas. Whatever it deposits on, it causes havoc and malfunctioning.

This disease is not as rare as you'd think – it affects about one in every 250 people worldwide. Now, I have 270+ friends on Facebook, and some of you have triple that number, so you do the math. It's a genetically transmitted disease, so if you have it your kids and grandkids will likely inherit it. Even if they don't manifest it, they are carriers, and their kids might have it, too.

I decided to share this with you all, my extended network of friends, as I have not done so in the past, just to create awareness, and not to panic you or to cause you to run screaming for the doctor. I wanted to do this for your own knowledge, which I firmly believe is power, and for your lives and the lives of the ones you love.

Why now? Because a lot of things (good and bad) have happened recently. But let's not jump to it. I'll explain it all.

I have lived with this disease since I was born, but I didn't know about it till I was 8. Knowing about it that early in my life has helped me get to the right doctors and to the right medicine and has helped me be alive today, really.

Just to give you an idea – your normal total cholesterol maxes out around 200 mg/dl. Mine was 790 mg/ dl when I was 8. If your cholesterol is high (and if you don't have FH it can never be this high!) your doctor will tell you things like: lose weight, stay active, quit smoking, eat low fat, or “good” fat. This are all good things for all of us. Unfortunately, none of these things apply to an FH patient. Even eliminating all fats, not ever being overweight, not ever smoking, and being active would not help an FH patient at all.

One of the main reasons I want to speak about this is because of the bad rep that cholesterol has gotten in the media recently. I have come across uncountable articles, some of them from reputable sources where alleged medical spokespersons say that cholesterol is not bad for you, that carbs and sugar are bad for you, that it's all an invention of the food companies alongside pharmaceutical companies to sell us more sugary stuff and more Lipitor (one of the more popular cholesterol drug).

I agree that if you do have a normal cholesterol metabolism and you keep an active, nutritionally diversified and balanced diet and a 'clean' life, then cholesterol in the foods we eat is not intrinsically bad for you.
I have also read articles that try to convince people that cholesterol is not, in fact, one of the major causes for the number one killer in the nation (bigger than cancer), heart attacks, and of strokes. This is actually severely flawed. And I wanted to make sure you all know better than this.

I can only tell you what happened to me and my family, and that is: cholesterol kills. And before it kills, it messes you up! My grandfather on my dad's side died after 12 years of being paralyzed as a result of multiple strokes, all caused by cholesterol and plaque deposits. He died at 62. All his brothers and sisters died in their 60's or younger of either strokes or heart attacks caused by blocked arteries. My dad's sister has had stent surgery to open up blocked arteries in her legs in her early 60's. My dad needs to have the same surgery and has had coronary artery disease for many years now. He is 64.

As most of you know, I have had an overhaul of a surgery this year, that replaced my aortic valve, my ascending aorta with man-made devices and repaired four blocked vessels in my heart (that is a quadruple by-bass surgery, y'all). I also had a heart attack this year, after this surgery. I am only 41. My surgical team was floored at the state of my ascending aorta. Your aorta (and any artery, really) should be flexible and fibrous, like a soft cotton tube. Mine was like a PVC pipe – rock solid, and if they knocked on it, it would shatter. Two of my three leaflets in my aortic valve were calcified shut and the valve was narrowed. All because of cholesterol.

I have been on medication for most of my adult life, but with a genetic disease, they only can help so much. There is no cure for this. All you can do is hope, live your life to the fullest from one appointment to the next and follow doctors' orders, to help your body live with this. And stay informed on what is next. This is what I follow in my 'other' blog which I am sharing with you below.

What you should know if you have this disease, or if you're curious about finding out more:
There are some resources I'll share with you here, that will explain more, but basically:
if you have unusually high cholesterol that will not go down with regular diet and exercise, start getting suspicious and order a cholesterol check at your next physical appointment. Also, interview your relatives and find out if they have something similar going on. If you already have a factor that predisposes you for heart attacks and strokes, be doubly aware of your cholesterol level and intake of it in your foods.

I am not saying this now to panic anyone, I just want you guys to be aware, because you're all important to me.
And now, for the full disclosure:

I have written this blog, called “Living with FH (and Heart Disease)” for about 5 years now: . You're welcome to follow it, or if it's easier to follow on Facebook, you can “like” the page and follow it there: . It's not terribly riveting, but it is a pretty accurate documentary of my 'medical' life, if you will.

Starting this year, my blog has been a feature feed for the FH Foundation's website, which is a huge honor for me. I encourage you to start your research on their site – they are doing an amazing job to raise awareness in our communities about this disease, and to save lives.
Their site is: . If you navigate to their News & Blog section, you'll see my blog linked there, as well: .

I wanted to share all this with you, to celebrate FH Awareness Day tomorrow and to celebrate the new lease on life I have been given time and again only because I knew. I hope you will read but most importantly share this with people you know this information might help.

If you do have questions or don't know where to start, I hope you email me and keep me posted.

Happy FH Awareness Day, y'all! And happy health!

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