Stephanie's story

A decade ago, Stephanie Dunkley’s cholesterol lipid level was found to be raised at 6.1mmol/L, but her then GP thought her overall risk of heart disease was low, as she was active and otherwise healthy.  Years later, she discovered that her risk of heart disease and a heart attack was in fact very high. She told us about her experience and what it has meant for her family. 

‘’I became increasingly worried, as my cholesterol level was going up despite making changes to my diet and lifestyle. Then my sister had a stroke and no underlying cause was identified.  I discovered Heart UK’s website, and read about the genetic condition ‘familial hypercholesterolaemia’. I applied the diagnostic tools on the website to myself and I came out as possible FH.  

Just before the first Covid lockdown, I saw a different GP and presented my results. My latest total cholesterol results had also come back at 7.8 mmol/L with ‘consider familial hypercholesterolaemia’. As a woman, being undiagnosed and untreated at 60 meant I already had a 50% chance of having heart disease.  To avoid delay, whilst waiting for a lipid clinic appointment which took a year, I was prescribed statins.  When I saw the Lipid Consultant, he agreed with the assessment of possible FH as my dad died at 61 and my paternal grandfather had also died of a heart attack at 45 yrs.  Further blood tests discovered that I also have a very High Lipoprotein (a), another genetic blood fat related condition that further increases your risk of cardiovascular disease.   

I used Heart UK’s website and helpline several times during the pandemic to learn about FH, and High Lipoprotein (a).  It helped me prepare for my medical appointments and to manage my condition.  The Heart UK nurse was sensitive and receptive, and I trusted her expertise and knowledge of cholesterol and heart health. The nurse reassured me that I was asking the right questions and I was seeing the right people.  I do not have children but discussions about genetic testing have commenced. Meanwhile, my adult nephews and nieces have been advised to get a cholesterol test.  

Thankfully, I am now on treatment and my risk of cardiovascular disease is now significantly reduced.  If you have an underlying genetic cause of high cholesterol then you can still develop heart disease, even if you have a healthy diet and are fit and active. Tragically, it causes so many premature deaths in the UK. HEART UK is working hard to increase early diagnosis of FH and public awareness of inherited high cholesterol. Thank you, HEART UK’’.