Name a cholesterol-lowering treatment, Patricia Young has done it – and was probably among the first to take it. At 67 years old, Young may be the oldest person living with homozygous familial hypercholesterolemia (HoFH) in the U.S. “I’ve been going through the history of this disease in one lifetime,” says Young.
Born in Chicago, Young’s cholesterol level as a child was over 1,000 mg/dL. She had xanthomas at a young age. “It was so devastating as a child,” Young explains, “In the summertime, I wore long pants and long sleeves to hide my knees and elbows. I had problems with shoes because one foot was one half size bigger than the other because of Achilles tendon xanthomas.”
When Young was 12 years old, she had her xanthomas removed, and luckily, they’ve never grown back. At that same time, the doctors she saw gave her the best diagnosis they could in the 1960s. She was told she had high cholesterol and “fat globules.” They also had her undergo partial ileal bypass surgery to lower her cholesterol, a procedure that is now out of practice.
“What did he think? I ate a bucket of lard for lunch?”
Young went on to serve in the US military for 21 years. When she took her physical to enter the Army, her low-density lipoprotein (LDL) cholesterol level was around 400 mg/dL, and the doctor assumed Young had lied about fasting for her bloodwork. “I told him no, I did fast,” remarks Young, “What did he think? I ate a bucket of lard for lunch?” The doctor waived her through anyway.
In the 1980s, Young became pregnant with her daughter, and her specialists were stumped. “They had to watch me because they didn’t have any data on someone like me going through a pregnancy,” Young explains, “So they took me off my cholesterol medicines and I was hospitalized for months.”
That’s when Young was told she had HoFH and it was rare. So, Young decided to educate herself. “When I sat down and read what I could find about it, it said people with my disorder usually don’t live beyond their thirties. I was 25 and had a baby. That’s when it sunk in and I thought, oh crap – I have to beat this.”
“They were all astonished I was still around.”
At this time, Young and her family were stationed in Maryland, and someone told her about the National Institutes of Health (NIH). Without an appointment, Young packed up her baby, drove to the NIH, walked in, and found the lipid clinic. She told her story and insisted they help her and her daughter – who has been diagnosed with heterozygous familial hypercholesterolemia (HeFH). “I was in my mid-thirties, and they were all astonished I was still around,” says Young. They ran some bloodwork and started treating her with lipoprotein apheresis – a treatment she did for over 20 years.
Today, Patricia lives in Northern Virginia and still works for the federal government. She’s now treated with a PCSK9 inhibitor alongside other cholesterol-lowering drugs, including a statin. She also practices a pescatarian/vegan lifestyle. It all helps, but her cholesterol is still too high.
She volunteers as a Family Heart Foundation Advocate for Awareness. “I was looking for other people like me,” says Young, “because it’s easier to talk to people when you’ve dealt with the same things.” She says she particularly enjoys talking with parents of children with HoFH. They compare notes and experiences and Young can offer some wisdom from her life with HoFH.
“I can’t tell you how many cardiologists I’ve fired.”
The Family Heart Foundation also helped reconnect Young with the institution that originally gave her the rare diagnosis – the Johns Hopkins Hospital. Today, she sees Director of Advanced Lipid Programs, Dr. Seth Shay Martin. Young is happy with the care she receives at Johns Hopkins, but she hasn’t always been happy with doctors elsewhere.
“I’ve had to take on a certain attitude when it comes to my health,” she says, “I have a famous saying with new doctors. I tell them, ‘We need to come to an understanding. I understand that you have a Ph.D. in medicine, but I need you to understand that I have a Ph.D. in me.’” Young is assertive and confident in the knowledge she’s gained from her experiences. She expects doctors to hear her so they can communicate and learn from one another. “I can’t tell you how many cardiologists I’ve fired,” she says.
“It’s been luck meets opportunity meets knowledge.”
Young urges everyone, FH or no FH, to educate themselves on what goes on with their bodies. She recognizes that if it weren’t for the knowledge and tenacity in being her own health advocate, she may not be here today. “For my case, it’s been luck meets opportunity meets knowledge.” And she’s eager to share her story with everyone. “As soon as I hear somebody say, ‘I have high cholesterol,’ I go right into my talk.”
Young continues to fight for her own health. She’s currently battling her insurance company for approval for evinacumab, a new medication FDA-approved specifically for individuals with HoFH.
While she advocates for herself and others, she has a simple request: “Have your cholesterol checked. Just have it checked. If it’s high, and your medicine isn’t bringing it down, let me know, and I can help you find a doctor through the Family Heart Foundation.”