Father and Son Share Familial Hypercholesterolemia – One Common, One Rare

August 21, 2016

Thanks to Eagle Tribune for this piece.

Jonathan Karas has high cholesterol and nearly died from it.

He survived a heart attack, got married, and then his wife gave birth to a boy — who at age 9 is battling a case of high cholesterol worse than his dad’s.

With a total measured cholesterol of about 1,000, you might think their son, Max Karas,binges on ice cream, pizza and potato chips or that he is drastically overweight and lies around doing nothing.

You’d be wrong.

At just over 4 feet tall and shy of 60 pounds, Max is lean and active and enjoys a simple low-fat diet that includes foods such as cereal and bananas, healthy smoothies, hummus with pita bread, plain pasta and home-baked chicken nuggets. And he’s not much of a red meat eater.

Because of a genetic disorder passed down by his parents, Max has to take several medications to lower his cholesterol. Each week, he also must undergo six hours of “LDL apheresis,” a process in which his blood runs through a machine to remove the “bad” LDL cholesterol.

For Max, it’s a roller coaster ride. After his weekly treatment, his LDL cholesterol drops to 35, then hour by hour begins rising until a week later it’s at an unhealthy level of 200 or more.

The world will soon learn more about Max and his father and what they have to endure to combat “familial hypercholesterolemia” — a genetic disorder more commonly known as FH that makes their bodies unable to remove low-density lipoprotein (LDL) cholesterol from their blood.

The Karas family of Bradford is featured in a WebMD “Innovations in Care” video series with famous broadcast journalist Soledad O’Brien that will be available for viewing starting Thursday morning.

The father and son are telling their story in hopes that people with high cholesterol and their children who can’t seem to lower their cholesterol through diet and exercise will consider being evaluated for FH.

“Our goal is to prevent heart disease, so the earlier you discover it the better,” Jonathan Karas said. “Any kind of public opportunity to get the word out is key, which is why my wife and I volunteer with the FH Foundation to get involved in things like this. With something like WebMD, it’s going to get a lot of views, I hope.”

WebMD is a website which provides medical information. It is popular with people across the country as a medical resource.

Heart attack led to discovery

Jonathan Karas, 41, had no idea he had FH until he suffered a heart attack on Jan. 3, 2003, at age 28.

He was single and living with his sister in Danvers.

“I woke up feeling nauseous with heaviness in my chest and a numb left arm,” he said. “I called my mom and she put me on the phone with a nurse who said she thought it was a heart attack and to get to the hospital.”

Karas said testing proved it was a heart attack. He was sent to Brigham and Women’s Hospital, where he underwent two procedures in which doctors inserted three stents to relieve the blockages.

“I recovered and my life hasn’t been the same since,” he said.

At the time, his cholesterol measured in the 300-plus range, as opposed to a normal level of about 170, and his LDL was 326, which is about 200 points above normal range.

“My last test, the LDL was about 86, but because of my heart attack they want it below 70,” he said.

Karas learned there is a big difference between high cholesterol caused by diet and high cholesterol caused by genetics.

“Diet and exercise only contribute to about 10 to 15 percent of your total cholesterol if it’s caused by genetics,” he said. “If it’s caused by genetics, you will probably need medication, including statins, which are drugs that act to reduce levels of fats, including triglycerides and cholesterol, in the blood.”

Karas and his son both take statins to lower their cholesterol, and also take baby aspirin.

“I adhere to a low-fat diet the best I can and I get exercise,” Karas said.

Karas plays drums in a rock band named Buxton Cliff and practices vigorously for about six hours a week, in addition to regularly taking his two dogs for walks.

He said FH is under-diagnosed, which is why he and his wife, Erin, volunteer with the FH Foundation.

“I recently gave a talk at a medical conference in Boston,” Karas said. “I shared my story and talked about how FH is under-diagnosed.”

He said that worldwide, as many as one out of every 250 people have FH, and that more than 90 percent of people who have FH don’t know they have it.

“The diagnosis is a simple test,” he said. “If your cholesterol is over 170 and you have a family history of heart disease or high cholesterol, you probably want to be tested.”

Son’s case worse than dad’s

Max has a more severe form of FH, which was passed on to him by both his parents.

Karas said his son was about a year old when doctors determined that an orange discoloration on his wrists was Xanthoma — a buildup of cholesterol under the skin.

Although he was just an infant at the time, Max’s cholesterol was more than 800.

“Six months later, it was over 1,000,” Karas said. “Because FH is genetic, it starts at birth.”

Beginning over a year ago, Max began weekly blood cleansing treatments at Boston Children’s Hospital. During the school year, he missed one day a week, but the all-A student arranged for a tutor in the hospital to help guide him through his school work. Max will be entering fourth grade at Bradford Elementary School in the fall.

“My wife quit her job in office management to take him (for treatments) each week,” Karas said.

Max takes it all in stride and said that after each six-hour long treatment, he feels “lighter” and more energetic.

“While I’m in the hospital, I like to read and watch movies,” he said, adding that he is on the fourth book in the “Harry Potter” series.

Max said he loves studying science in school and that he’s taking keyboard lessons, enjoys swimming with friends and loves playing video games.

“I’m learning to cook from my mom,” he said.

Max also loves riding his bicycle, but because he has two ports that were implanted beneath the skin above his left rib cage for use during his treatments, he can’t participate in contact sports.

Karas said Max’s doctor is the head of cardiology at Children’s Hospital and keeps the family informed of any new medications that could help Max reduce or even eliminate his weekly hospital visits.

“There are new drugs coming out, like PCSK9 inhibitors that we are pursuing,” Karas said. “It was approved last year for adults, but Max’s doctor is pursuing it for pediatric use.”

Starting at 6:30 a.m. Thursday, you can see the video in which Jonathan and Max Karas talk about FH at

Thanks to Eagle Tribune for this piece.

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