Beth's story

High cholesterol stole Beth's father from her family at age 34

My cholesterol was picked up when I was about 6 or 7 because of severe migraines. My cholesterol was 11 then. My Sister was also checked and she had slightly raised cholesterol. Although we trialled some medication, as we struggled to swallow it, the routine was abandoned until I got to about 30 and moved to Bristol. I was nearing the age that my Dad died (he died when  he was 34) and no amount of dieting or exercise was lowering my cholesterol. I didn't seem to be able to get my overall level below 9 by myself,  so I kept asking my GP to check. 

High cholesterol stole my Dad from us and by all accounts made him feel very unwell during his life. We will never know how much he suffered but we know he had many mini heart attacks before his major one as there was so much scarring on his heart. I can’t put into words how the loss of my Dad has affected us all. I miss him more and more the older I get, especially at key moments in my life such as when I got my degree, got married, then had my daughter and he wasn’t there for any of it. I will miss him until the day I die. I couldn’t possibly explain the emotional damage, grief and distress that high cholesterol has caused in my family. It also caused some feelings of guilt as for years the condition was understood to be lifestyle related, and not genetic. It was eventually confirmation that I had inherited FH that enabled my family to fully realise that there was an underlying problem that could be helped with medication. 

I emailed HEART UK's helpline when I moved from Reading to Bristol. I explained my family history and my cholesterol levels and my fears that diet and exercise alone could not help me and the lack of help from previous GPs. I got such a lovely, supportive, and very sensible reply telling me to register with a new GP in Bristol and ask to be referred. The helpline nurse urged me to get help and not ignore my family history. I did just that and saw a lovely GP who was very happy to refer me. The rest is history. My consultant set me on a course of statins and arranged genetic testing, which I shared with my family. My Sister didn’t initially think she had a problem as her cholesterol levels were 6 and never as high as mine. The consultant encouraged her to get genetically tested as she had a son who was aged 8 then and FH generally affects men sooner than women. She agreed to it but then we had to convince her GP to refer her (they wouldn’t as my sister's level wasn't as high as mine). It took my consultant to contact her GP and express his concerns for her and her son. My sister and her GP were shocked when her genetic test came back as positive. Her son was swiftly checked and had a level of 9 and was put on a course of statins in liaison with Great Ormond Street hospital. He has been brilliant and is 13 now and still sticking to his course of statins.

Beth is an Ambassador for HEART UK and is keen to raise awareness about FH.