Living with HoFH

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Tom knew, for as long as he could remember, that almost everyone in his family had very high cholesterol. Both of Tom’s uncles had multiple heart surgeries and strokes before the age of 50. That was normal for his family.

When Tom had a heart attack at the age of 29, he and his wife Rachelle were scared and in shock. They had a growing family to care for and Tom, a miner in Pennsylvania, was supposed to be around for years to watch his kids grow up. Tom was diagnosed with Homozygous FH, the most severe form of FH. Despite this diagnosis, his doctors did not change his medications or his care. Seven years later, he was back in the hospital, this time for open heart surgery. Tom was again told to stay on his current medication regimen and that he would most likely need another surgery within 10 years.

Tom and Rachelle knew they had to find out more about his FH, take action to save his life and assure that he could take care of himself and his 5 children.

“We felt like we were on an island, alone and stuck without the help, the information, or the resources we desperately needed.” —Tom and Rachelle Weiser

In 2013, Tom found the FH Foundation online and became a part of the FH Community. As a result, Tom advocated for more appropriate and aggressive treatment of his FH.  Tom now receives Lipoprotein Apheresis, in addition to his other lipid lowering treatments.  He is an active FH Advocate for Awareness, trained by the FH Foundation, to share his story of hope with his community.

Today, Tom and Rachelle rely heavily on the community they discovered through the FH Foundation. Community Forums have helped the Weisers’ 12-year-old daughter, Julia, understand her FH diagnosis and meet other children affected by this life-threatening genetic disorder. Julia now knows she can live a normal and long life with FH by taking the right steps to prevent early heart disease. The online Facebook HoFH discussion group keeps Tom connected to other individuals with HoFH. Tom feels supported because he is up to date on available treatments and connected with the best FH specialists in the country.

“At the end of the day, we just want others to know they are not alone.” —Tom and Rachelle Weiser

 

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