Tom and Jack Howaniec

Tom and Jack Howaniec

Ages: 51 and 8

From: Auburn, ME

Barbara Howaniec knew her husband Tom had been diagnosed with the genetic condition familial hypercholesterolemia (FH) when they got married. In fact, Tom had been trying to manage his cholesterol levels since his mid-twenties. When Barbara and Tom were planning their family, their physician told them that their children might be at risk for FH as well, and that they should be screened by age six. Barbara had never imagined she’d have to worry about her children having high cholesterol.

Their first child, Jack, was diagnosed with FH two years ago and their 6-year-old daughter does not have FH. Jack has to work to control his cholesterol through exercise and dietary changes, and while this is daunting for such a young child, Jack’s early diagnosis could save his life. Barbara and Tom struggle with the decision to start Jack on cholesterol medications since their long-term effects are not yet known. Although Jack doesn’t let FH interfere with his daily life, he knows the importance of staying active and eating healthy, low-fat foods so that his risk of developing cardiovascular disease is greatly reduced–in hopes of avoiding the invasive surgery needed by his father and grandmother.

Though Tom might not have been aware that FH ran in his family, he lived with the grim effects it had on his loved ones. Tom’s grandmother died at a young age of heart disease and his mother had quadruple bypass surgery at the age of 60 and a stroke 20 years later that caused her death. Even with a high incidence of cholesterol issues, no one told them it could be genetic.

When Tom was in his mid-twenties, he was diagnosed with FH and immediately started taking medication. He also worked to modify his diet and exercise to control his cholesterol. A few years after his diagnosis, the aggressive effects of FH led to a 90 percent artery blockage and Tom had an angioplasty. It has been a game of hit-and-miss trying to find the right combination of medications to keep his cholesterol down, but Tom has found a good system and is also working to help the development of new drugs by participating in clinical trials.

In addition to helping her husband manage his FH, Barbara deals with the added stress of making sure her young son stays healthy as well. Barbara is fearful of losing her husband and the impact that will have on her young children. She is also afraid that Jack might not be able to have as active a life as his peers.

In addition to having access to more information on FH, Barbara looks forward to the day when FH is a widely-recognized term and doctors do more than just tell patients they have high cholesterol. Instead, she hopes that doctors will take the time to explain that they have a genetic form of high cholesterol called FH.

Most importantly, Tom and Barbara hope that patients will seek out testing for themselves and their children earlier so that treatment programs can be started as soon as possible.



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