When it comes to the genes that have made me who I am – I got a really badbunch.
I have a very rare condition called MUTYH (MYH)-associated polyposis (MAP)which is a hereditary condition that affects 0.7% of the world’s population. Inorder to get this condition, I needed to get a bum gene from both parents(hence why it’s rare). People with MAP tend to develop multiple adenomatouscolon polyps during their lifetime. They require a full colectomy in order tosurvive this condition.
I had a colectomy in 2013 and when they opened me up, they realised that mypolyps were actually on the outside of my colon which was a first for mysurgeon. The 3–4-hour operation ended up taking 9 hours because they needed topainstakingly check every inch of the colon and of my stomach to remove anyrogue polyps.
I was able to keep a tiny bit of my colon that connects with my bowel so Ido not have a colectomy bag but I have yearly procedures to check there are nopolyps on that small section. Since the original operation I have had sixremoved.
My blood group is O- which only 7% of the world’s population share with me.It’s the universal blood group so I can save everyone else but when we needlarge amounts of blood, we have to find a buddy who is willing to swap with us.I always remember the surgeon who did my colectomy saying that getting anyextra blood for me would be “tricky” if I had a bad bleed during the operation.That was the last thing I thought of when they put me under.
I have aortic regurgitation which affects 8.5% of the world’s population.It’s thought that I contracted this via rheumatic fever when I was a child. Itallows some of the blood that was pumped out of the left ventricle of the heartto leak back in. As the left ventricle works harder to keep pushing bloodthrough the aortic valve, it may eventually enlarge and weaken. A weakened leftventricle may lead to heart failure.
I have regular check-ups with a cardiologist and at some point, I would haveneeded surgery to replace the valve with a mechanical one. I have chosen not togo along with that procedure if it becomes necessary, heart failure would be somuch kinder than dying of early onset Alzheimer’s.
And finally, as you know I have early onset Alzheimer’s which affects lessthan 10% of the world’s population.
I like to think that when God made me, he wanted to make me SPECIAL!