Amie's story

I was told that I would have heart disease in my forties 

''In December 2000, my dad had two heart attacks and then required a quadruple bypass. The cause was high levels of cholesterol.

I was 12 when my cholesterol levels were first tested, as advised by my dad's specialist.  They were high. I was immediately put on a diet that was low in saturated fat and prescribed medication which I took on and off over the years as I had difficulties tolerating them. I was told at a young age that I would have heart disease and heart attacks at about age 40 and, as I’ve been getting closer to the age, the panic has crept in. 

In Dec 2017, I was put forward by my specialist to have the genetic test to actually see which gene I had as new medication had just come out in an injection form . The results revealed what I already knew, that I have FH (familial hypercholesterolaeima), but I have the APOB gene. In fact, I am the first person in the Black Country to be officially diagnosed with FH from the genetic test. I was then put on a fortnightly injection to control my cholesterol.

I had to wait a few more months for the children test to be cleared for my son to be tested. The chance of him inheriting it was 50:50. I felt really worried and nervous as the weeks dragged on while I was waiting. I knew I needed to know, but at the same time,  I was that child who had to go through regular blood tests and try every medication going. But I also knew the quicker we found out, the better for him. I was so grateful to discover that my son hasn't inherited the faulty gene, so thankfully FH ends with me in my family. 

I’m also so thankful to my amazing lipidologist who patiently treated me from childhood into parenthood, adapting my medication and requesting heart scans to see what was going on.

As FH is higher risk for premature heart disease, you have to be informed and stay ahead of the condition. That's why HEART UK's work raising awareness, advocating screening for FH and supporting families is so vital.''