My experience with Familial Hypercholesterolemia, or “FH,” started 30 years ago when I lost my father. I have very happy memories of him, even though I only had him for seven short years. He was a man in his 30’s with a family and a love for life. However, I also have memories of a sick man in the hospital having surgeries. I remember days that he couldn’t take me to ball practice or even get out of bed. My dad was a man with FH, though we did not know the name for it at the time. He was taken from me when he was 39 years old.
I was diagnosed with high cholesterol a short time after my father passed – though I did not know it had a name. I was eight years old and it was 1993. All I knew was I had my dad’s disease. I was taught to read food labels and be conscious of fats and cholesterol. I feared I could have a heart attack if I didn’t eat properly. Even though I was diagnosed as a child, I was not prescribed medication.
The story I have is unfortunately similar to thousands of others. My family doesn’t usually see men live past age 30. My uncles, grandfather, father, and brother were all taken way too early after multiple heart attacks, strokes, and surgeries. So, I stayed active, and I was very athletic and stayed in good shape. I carried the constant fear that I would suffer the same fate as all the other Wilson men. At the same time, I tried to live a life like anyone else as a teen and into my 20’s. Like most young people, I still felt invincible in spite of my medical diagnosis and family history.
I remember my first episode with chest pain very well - I was 22 years old. It was the first time the hospital said my heart was “fine” and sent me home. It was the first of many times that I was told I was “too young” to be having heart trouble. I had a hard time maintaining health insurance so the few doctors who would actually see me and prescribe a statin were soon gone due to a stack of unpaid medical bills. Fear of the inevitable constantly loomed over me, alongside that “oh well” mentality. After you are turned away so many times, you lose hope. My thoughts were, "Nobody will ever take me seriously and treat me aggressively. I’ll just live my life however I want because I can’t get the help I need anyway. I’ll have to settle for the fact that I’ll be a man in his 30’s with a wife and kids and I’m going to leave them behind. Heart disease will take me away in true Wilson-man fashion.”
On the brink of my 30th birthday, everything changed. I woke up for work like any other day, but everything felt “off.” The worst pain I could imagine in my chest and back overwhelmed me. “This is it…” I thought. The doctors did the work-up on me and my EKG and enzymes were normal. But, I had enough morphine to take down a horse and I was still in pain. So, off I went for a cardiac Cath. I came out with a stent and a new appreciation for life. My Left Anterior Descending artery was 99% blocked. I soon learned this is what they call the “widow maker.” I thought they said I was too young and my heart was fine! Turns out this was the beginning of my battle with heart disease caused by FH and only my first heart attack that year. My second would be just 7 months later.
Fast forward a few short years and a few stents later, to age 35. I had no real direction in the management of my heart health, no answers for what to do next to protect myself. A feeling of loneliness and hopelessness set in. By this point, I did not even want to acknowledge the pains in my chest. No matter what, I was still never taken seriously. I’d had three stents and two heart attacks and still nobody was willing to dive into the issues and find a solution. Also, at the time I still had no insurance to do all that was necessary.
But then a day came that changed everything. It was only one month after I finally gained insurance and I once again was feeling like something wasn’t right. I knew something was wrong and it was bad. Once again, another normal EKG and enzymes. This time though, they sent me back to the Cath lab, but after years without proper medical care, it was too late for stents. This was my third heart attack and now I needed quadruple bypass surgery at age 35. Though it looked like I was about to follow in the Wilson footsteps, this is actually where I started a more hopeful phase of my life journey.
Shortly after the surgery I started to search for answers myself. I finally found what I had been searching for. It wasn’t a miracle cure and it sure wasn’t a doctor who knew what the heck was wrong. I found my second family - I found the Family Heart Foundation. Through my relentless searching on every platform, I found hope. I found a group of people who showed me exactly where I needed to be, they even gave me a name for my condition, “Familial Hypercholesterolemia.”
My wife and kids, my whole family and my friends are my driving force to get up each day and do what needs to be done to live a full life. The Family Heart Foundation is the massive army and the ammunition that I needed to fight FH. They give me what my dad and other Wilson men didn’t have – the knowledge and resources that could have saved them. Through the Family Heart Foundation I have had access to genetic testing and a wealth of knowledge that I never would have imagined. What I really gained was how important advocacy is. Not only do I now have the ability and wisdom to stand up for myself and ask for the treatment I need, I have an entire foundation that has my back. Not only can I help myself now, they’ve trained me to advocate so I can help others too.
I am currently fighting harder than ever to beat FH. I am experiencing a failing bypass, occluded arteries, restenosis and the unwillingness of doctors and local healthcare to treat me with urgency. Every day I watch my oldest son go off for his senior year of high school worrying if his father will be home or in the hospital at the end of the school day. At this point, my son has seen me have four heart attacks (my fourth was just two months ago), six Caths, open heart surgery and countless ER visits. My wife and younger children just want me to be able to participate in activities, but I’m stuck inside with the passion for life of a man in his 30s, but the heart of a man in his 80s. I fear they see me like I saw my father.
The purpose of my story isn’t to make anyone sad or feel sorry for me. It’s to encourage you and give you hope. Because I now have the tools to advocate for myself, I recently saw a lipid specialist who got me on the right medications to bring my LDL cholesterol down where it needs to be. But, the damage was done, so now I’m currently awaiting consultations and surgery with some of the greatest doctors and surgeons in the country to take care of my heart disease.
I owe so much to my 2nd family – the Family Heart Foundation and the community of those with FH who support me. Although what I’ve gone through has not been fun or easy, I’m grateful for all of it. I am so grateful to my mother for knowing how important it was to get me tested young and to know my family history. I wish, as a result of her doing the right thing then, I had received the treatment I needed at the time. I have tried to take what I’ve learned and build on what my mother did for me. I had all of my children genetically tested through the Family Heart Foundation. My daughter is the only one of my children to carry the same gene as me that causes FH. My goal is for her to never face the same issues I have. With her early detection at age one, it’s likely that our family heart disease can end with me.
My children may never know a time that their daddy didn’t have heart disease, but they can know that I and others before me have laid the groundwork for their futures to be bright with healthy hearts. The Family Heart Foundation is the cornerstone for all of us. For me, I am able to plan for the future again and I look forward to living an amazing life with my family. My father would have been 68 years old today. I wish he were here with me. I know that I am blessed to have the opportunity to not only be here for my own kids, but to help prevent other children from losing a parent as I once did.
Brandon Wilson Advocate for Awareness The FH Foundation
Editor Note: Brandon is a Family Heart Foundation Advocate for Awareness. See his family’s genetic testing story below.