The basics of it is:
- it affects the skull bones (cranial).
- the skull bone is very thick and in most cases keeps growing thicker (explains my big head!).
- my facial paralysis has occurred because the facial nerves which go through the skull has been squashed (like stepping on a hose).
- the increasing growth of skull bones can cause deafness and/or blindness.
- my deafness seems to be connected to this condition. Since birth I have known that I am deaf because my ear bones are not the right shape (so do not function). Recently, a CT scan has shown that my ear bones are not only the wrong shape but are actually fused to my skull bone (so do not move either...the three small ear bones are designed to move).
- the pressure on the nerves (from the skull) can cause debilitating migraines.
- physically it alters the shape of the nose. Our noses are usually quite wide and flat.
The main disability of this condition has been my facial paralysis (Moebius Syndrome). I do not mind being deaf - it has never stopped me doing anything. Sure it is annoying. Most of my cuddles come with an ear piercing whistle emitted from my hearing aids, not everyone likes this. I can't hear anything without my hearing aids, which is great if I don't want to hear anything (night time for instance). But if I actually want to partake in a conversation while swimming, standing in the rain, in the shower, in bed after lights out...then I can keep wishing. But being deaf is certainly not unbearable.
On the other hand, my facial paralysis has been, and is, hard to cope with.
Some of my friends say they don't notice anything, but how can you not? I do not smile and my face looks all twisted when I do try to smile. My lips only open and shut when I talk, they do not form the shapes of different sounds. My eyebrows do not move at all. When I sleep, my eyes do not fully close. I cannot open my mouth very wide. I cannot purse my lips, and I find it difficult when drinking from a bottle, using a straw or even some eating utensils.
As a child, and even now as an adult, I find it difficult to be social. I am usually the quiet one who never says anything. I didn't want to attract attention to the fact that my face does not work. I hate having my photo taken.
I was tormented as a child. Other children can be really cruel. There have been more than my fair share of taunting as an adult also (will explain these in a later post).
Malcolm and I do not want the same cruelness aimed at our own children. It is only recently that we have found out that there is a chance I (and future natural children) could go blind or deaf (though I already am deaf). GPD is a way that we can eliminate the chance of this in future children.
This is why we've opted for genetic pre-implantation.
It's so sad that the facial paralysis is harder than being deaf. It's sad because the problems it has caused you, are all because society doesn't accept you the way you are. It really shouldn't be the case.
ReplyDeleteGood luck with the PGD journey (though I see you call it GPD!)
Thanks for sharing. Good luck on your journey, I am interested on how things work out! Our 4 year old son was diagnosed with CMD at the age of 2. We were miss-diagnosed when he was 18 months but with persistence, we ensured the proper diagnosis by contacting the best doctors across the country for each diagnosis they would give us. He is very outgoing and loves being center of attention :) It is our goal as parents to keep him with this positive mindset throughout childhood by continuous reassurance. He has had over 12 procedures to date, mainly for ear tubes and nasal drilling (bones fused his nasal passages together) but has experienced some hearing loss but with our commitment to the best treatments, we have been able to fend this off with ear tubes and surgeries. I would just encourage any parent reading this to stay positive (this is what is best for you child), especially in the presence of you child! Also, do not give up, find the best help and ensure regular scans. You will not be able to prevent all possibilities this conditions brings but you can defiantly prevent some and prolong others from happening. Thanks again for sharing and if anyone need help with CMD,please feel free to reach out to me, fbisu88@hotmail.com.
ReplyDeleteChuck
my step-mom, (half) sister, two nieces, step brother and cousin have the same thing. since it is such a common thing in the family, no one really notices. I know my sister is very self-conscious, especially since her mom won't just accept it is a thing in the family... she still maintains that she was hit in the face by a swing as a child... Ugh. I guess my cousin has the strongest case of it, he looks like a beautiful lion with black hair. he hates it, though, because his father is a prick and ignored him for it, then when his mum died (cancer, not from this), his dad didn't take care of the health side for him. His spine is terrible, so luckily now he lives with our clan and we are taking care of him. I would like to know how things are going, and if you know of a great many resources for our lovely family. The cousin is crippled by his CMD, as it affects his spine, too, and has just had a surgery last week to correct the curvature that resulted form a lack of care as a child. He doesn't know how to have a family that worries about him, but we are giving him plenty of practice!
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