I am committed to raising awareness of the problem of cholesterol, especially that it can be inherited"
Share your story
Ellen Coker, Bury
Elle is one of our patient ambassadors and has been involved with HEART UK for more than four years, starting when her husband, Jamie, ran the London Marathon to raise funds for us.
Elle was diagnosed with homozygous familial hypercholesterolaemia (HoFH) at the age of 15, had a triple bypass at 21 and is now on weekly apheresis alongside several cholesterol-lowering medications.
Here they share their story:
”Elle and I got married in November 2012 and we are currently trying to start a family. Unfortunately due to Elle’s condition this is not as straightforward as it sounds.
Having originally hoped that we could conceive naturally we have now been advised that although Elle is fit and healthy and her condition is well-controlled, the risk of going through a pregnancy for both her and any potential offspring is simply too great.
This news was difficult to stomach but not completely unexpected. Rather than feeling sorry for ourselves we set about investigating our options as we are both desperate to add to the 10 nieces and nephews that already keep us entertained!
After months of medical research and soul searching, we have decided that although adoption remains a viable option we really want to do all we can to have our own biological family and ‘surrogacy’ is our preferred method.
As a result we are currently trying to get funding for IVF treatment to allow us to undergo a ‘host surrogacy’. This would mean we would both be the biological parents of an embryo formed via IVF but implanted into a ‘host’ surrogate’s uterus to carry through the pregnancy.
At the time of writing we have been turned down for funding and are currently going through an appeal. Although this news was bitterly disappointing and things aren’t easy at the moment, we both remain determined and positive.
We have brilliant support from our amazing families and our fantastic GP and lipid consultant are both fighting our corner.
We are so thankful that we are at least in a position where our own family is a possibility.
We know that one day (hopefully soon) we will have our own family and we hope to encourage and help other couples that will come across similar difficulties in the future.”
HEART UK is providing help and support to Elle and Jamie by reaching out to our networks around the UK, Europe and the US to help identify people in similar situations because this condition is so rare.
Elle and Jamie are keen to highlight the issues around pregnancy in people with severe FH. They would also like any other couples who may be in a similar situation to know what options are available to them.
For further information on surrogacy Elle and Jamie have advised the following website: surrogacyuk.org. Surrogacy UK is a not-for-profit organisation.
Find out more about Ellen's journey.