Tuesday, 18 March 2014


I have never been under the impression that having HME was going to be easy. One of these paths I often think about when sitting in an empty room, or when bored during a lecture from one of my dad’s famous, "when I was your age..." speech is; children, marriage, and all the what if's? any other teenage girl thinks about in their spare time, for that matter any teenager thinks about.

In my case the "complications" are endless, negative outweighs the positive. For starters if I were to decide to have children then there is a 50/50 chance he or she could also suffer from HME. I have read about plans to breed it out of the genetic sequence. How you might ask? Essentially pre-picking your child, but where is the fun in that? I have seen how hard it is on a parent to watch their child grow up with this condition. On the other hand I know how difficult it is on the sufferer at a young age (if not through life) to be able to get to where I am and understand the reasons for peoples harsh words, and degrading expression’s. All this has brought me to come to the same conclusion more often than not that I simply don’t have a heart strong enough to take that kind of pain. Yet I still dream of a day were it will be, where I will be.

Moving on to the next “complication” as so many have had the guts to tell me. Due to the spurs on my hips (bones) there is a chance I could kill any child at birth. I often imagine the pain the child would go through, that small chance of the cruelty and suffering I could cause something so small. To say it upsets me would be to lie to you, as well as lying to myself: for you see it kills me.

Then there is the least painful of all the least emotional, and traumatising. I could die. It sounds so simple, so meaningless to me any way. For me family is everything, and most certainly worth me dying for. My VWD would mean blood, and a lot of it. My own mother almost bled to death bringing me into existence, but she did it anyway, knowing the risks.

Any partner I have will NEED to accept these “complications” for they are a part of my conditions, of me. If he does not then it wasn’t meant to be. I do want a child of my own (with all my heart) but the cost….the pain….and the risk, I fear might be too much for one soul to handle.

I would say that if your condition affects your future, if its kids or an experience, then there is only one question to ask….

How much do you really want it? How much do you need it?

This question might never stop haunting my thoughts, or lingering in the shadows of my mind. Then again it could be something that I need to keep me going.

Remember you are not alone in the fight; there are always friends close, even if you do not see them…

Your Friend