My name is Dawn Davies. I am 41, married with three teenage daughters. I was a nurse but was medically retired 6 years ago. I have severe familial hypercholesterolaemia (FH).

Unfortunately for me I have inherited high cholesterol from both parents. I am not a homozygote but a compound heterozygote. Both parents’ defects have added together to make my own version.

I am told it is very rare to be as badly affected as me. I had chest pain at 27 but it wasn’t diagnosed until I was 34. I then underwent an urgent bypass because I was 98-99% blocked in all three coronary arteries. Unfortunately, my chest pain did not improve and I continued to decline as my cholesterol could not be controlled even with maximum drug therapy. When all options had been tried, further surgery ruled out, and maximum heart medication given, I was left with morphine and bedrest. Pain and incapacity brought about a daily wish for death. H·E·A·R·T UK and my cardiologist were there for me; they helped me find the right help and that in turn led to the right treatment. I have been having LDL-apheresis for the last four years and, while the treatment has changed my life for the better, without these people I would not be here.

What I would like to help achieve is a level playing field where the patients that need the treatment get it. LDL-apheresis is not some hocus pocus treatment but a proven therapy for people with severe FH.

I am now told I am classed as a miracle because I have passed my sell by date. But I am not! I have just had my problem properly treated. Last year I started a BSc in Diet and Health and I am now looking forward to starting a new career. I have various points of contact with other patients, through family, clinics, LDL-apheresis unit and an Ask Dawn column in The Digest magazine for H·E·A·R·T UK.

I have listened to many patients over the years and have provided many doctors and nurses with interviews for their research. I regularly give interviews for the press and have been asked on television and radio to provide information on FH.

The way forward is through research and evidence based medicine. This then needs to be into the public domain in a language that can be understood by the masses. With this and support from patients like me, family history can remain just that. With effective treatments and effective screening programmes, chronic disabilities can be avoided and lives saved

Dawn Davies