craniostenosis

If you've just typed Craniostenosis into a search engine hoping for information for what ever reason, I'm sorry but I'm not a doctor.

There really isn't much information on the internet that I found particularly helpful, I don't think it's one of those things that is well understood medically, last time I looked I don't think doctors or scientists have decided on the cause, I was born with this condition and obliviously I want to know more information about it.

 (like what are the chances of my future children being born with the condition, is there any thing I should be looking out for as I age?)

It must be horrible if you've been told that your child has this condition and like me turn to the internet and find very little information and while I can't show you your future in a crystal ball or even really tell you what to expect or where it came from I can tell you what I've learnt and what it was like for me.


Craniosynotosis is a cranial condition (condition of the skull) in which the fibrous joints in the skull fuse prematurely.

Basically when a child is born the skull has soft spots which allow the bones to move about as the child grows so if these joints have fused that obviously means the skull can't move or grow properly leaving the child with a deformed skull among many other things.

The infant skull is made up these sutures and they are meant to close at various different points in a baby's life but if the child has craniostenosis any number of theses can be closed.

As far as I know I was born with bi-coronal which is the two joints on the side of the forehead, so the skull was round (I would describe a normal baby's skull as bean shaped, kind of long and narrow ), I was diagnosed at 6th months when my parents took me to the doctors for issues involving my anus which is apparently related to craniostenosis 

(it was quiet sad really, as a baby It would take me days to pass my waste and I would cry, I had to have surgery for that, different cases have different symptoms, there is syndromic and non-syndromic and non-syndromic don't usually have any other symptoms other than the skull deformities, I'm unsure as to what I have exactly but because it runs in the family and I had skull and anal deformities I presume it's syndromic. )  

From the doctors I was sent to specialists and was eventually diagnosed I had both my opetayions at Great Ormond street hospital in London,  I seem to have been lucky as the condition can often effect hands, feet and brain development among other things, for me everything seems to be fine now, I also had surgery as a baby on my head to relieve pressure but I was so young I don't remember it.

 I believe my  scalp was cut open from ear to ear for my operation so my skull could be re-shaped and now I have a scar from ear to ear.

(thankfully I'm a girl with thick long hair so you can't see the scar normally)

Of course the closure of different sutures have different effects, my aunt for example only has one coronal suture closed and didn't need operating and just has a slightly uneven head. (I will get to her later.)

If the top suture is closed the child could have a narrow elongated head like a boat or if one of coronal suture's is closed (like my aunt) the haed would be lopsided and would appear bigger on one side,  there is a horrible form of Craniosynotosis where a number of sutures or all of the sutures are closed and the skull bulges out from the joints and the birds eye view of the head looks like a flower or star which makes me really feel grateful and appreciative of what I have, there are many different types.

Not an awful lot seems to be known about the condition and there seems to be no clear cause however 6-11% of sufferers have some one else in their family with the condition so it could be genetic, there are so many different forms of the condition too, some worse than others.

The condition is often coupled with deformities of the extremities like fused or deformed fingers and toes, according to my parents the doctors were surprised my hands and feet looked okay, I have small hands and feet and fairly short and slightly wide thumbs and big toes, one of the syndromes include things like cleft palates.

Because of the nature of the condition things like breathing, hearing and eyesight can be effected, many suffers have flat faces and wide set and/or bulging eyes like in the crouzon syndrome (a severe form of craniosynotosis).

I would like to say that for me growing up was fine, obviously everyone is different but I have no memories of surgery or anything and I didn't need any more operations after the first two as a baby, I was finally discharged from great ormond street at  17 and despite having to visit the hospital for check ups and the orthodontist nothing particularly horrible happened to me.

My aunt never had an operation, she diagnosed at a later age than me and she didn't want the operation, It wasn't necessary and she too is fine, although she regrets not getting the operation, so far no body else in my family has been diagnosed although my dad has signs of facial asymmetry and short broad thumbs.

To be completely honest it was so much worse for my parents and I feel so guilty about it, they are the ones who remember everything and had to deal with it while I don't remember anything horrible, I would like to thank Great Ormond Street hospital for making my experience enjoyable, I  think that the treatment is worth while and would recommend  it.

If any one has any questions or has any information feel free to comment and I'll get back to you. 

Sympathy is horrible.

Sympathy is not like empathy.

Empathy is when you know how someone feels and you can relate to their hardship, It's when you've been through the same thing or something similar so you know how it feels and can offer help or fairly judge how the person is handling the situation but sympathy is pity and pity is awful.

I was the sort of person who was pitied at secondary school, I was lonely and awkward and even when I finally made friends I still felt like people felt sorry for me.

Before I started school at 4 I was very talkative but when I went to school I became shy I think it was because I was the sort of kid who liked TV, video games and films and all the games I would play would be fantasy related, most children play role play games like house or mummies and daddies and/or competitive games like sports but I would play make believe with imaginary friends and things that had spawned from all the tv shows and video games I would immerse myself in and didn't really need or want other kids playing so I just didn't really have any friends and I think that is when others felt sorry for me and I remember older children tried involving me in their games but I wasn't really interested.

I did eventually find a friend and we would play make believe together which was fun because it was like someone else was a part of the story and they were also contributing to the  narrative, I did play role play games and competitive games some times but I preferred pretend so when we went to separate secondary schools I was friendless again and not to mention being at that age where you're going through puberty and you just look awkward and scrawny.

 I made friends at first but we broke up for reasons I'm still not really sure, this girl just decided she didn't like me and would rather I wasn't there which is probably why I found it so hard to find friends, I'm pretty awkward even now and struggle to talk to people out of my friendship groups and family and I even struggle talking to members of my extended family which is really sad, I guess I'm just scared of saying the wrong thing or embarrassing my self, it's like a horrible cycle of worry about talking to people and saying the wrong thing because you're nervous but then it just makes it even worse the next time because you're scared you're going to ruin everything again.


Any way I also used to be self conscious about my appearance too (on top of being self conscious of talking to people and embarrassing myself) my school uniform wasn't very flattering and my hair was greasy and messy but since leaving school and having the freedom to where what you want having braces to straighten my teeth and finally finishing puberty all made me feel much better about my appearance but this insecurity  and this added to my other insecurity because I got used to people insulting me or pitting me and found it harder to trust people, do you see where I'm going.

Sympathy is horrible because you are feeling bad about the situation that someone else is in, feeling sorry for someone when they are having a bad day or because they feel sick is fine but sympathy gets depressing when it is gets to the point where everyone feels sorry for you all the time, imagine you find out that you have a very aggressive form of cancer and lots of people feel sorry for you which is nice in the respect that they care but at the same time everybody treats you differently, no body wants to upset you any more and act like they are walking on egg shells, people you don't even know you look at you with sad eyes or try to avoid looking at you because they don't know how to react to you and even people you didn't like or treated you horribly in the past now are being nice to you making moving tributes to you on Facebook and donating to cancer research charities, That must be horrible because not only are you feeling sick and are scared but everyone is treating you weirdly when all you probably want is for things to be normal.

Because I was born with a condition called craniosynostosis I had to visit Great Ormond street hospital from the ages of 1-17  and even though I had relatively no problems following my operation as a 1 year old I still had to go back for check ups and for the orthodontist (because I had a condition that effected the growth of my skull it technically effected my teeth so they let me have braces even though my teeth weren't really any different to any body else) so while I was walking around this hospital fine and happy there were obviously lots of children who weren't and this took me a while to realize.

I had always been somewhat of a caring child and worried about other people and animals to the point of crying that they were in pain but I had forgotten that sick people went to hospital and when I reached 10  I finally realized that there were children in this hospital who were in lots of pain and were really ill and/or scared and there I was happily walking around actually excited and enjoying my visits to the hospital and I had been doing this pretty much my whole life and I felt horrible about it.

It is hard to react to seeing an ill person and at first I would just stare at the sick person wide eyed thinking "Oh no, that is so sad. That poor person" but then it occurred to me that staring at people make them feel even worse, how horrible would that be though no body awkwardly stares at a perfectly healthy person and when people are staring at you must feel so uncomfortable, some horrible people even insult people with deformities and disabilities so on top of the insults and the pity you also have some stupid little girl staring at you, it doesn't exactly help them feel better.

When I became aware that I was making people feel even worse by staring I started to quickly look away as soon as I noticed my self staring someone, but isn't that even worse, I mean it's bad enough someone is staring at you because you're in a wheel chair or what ever but to have someone acknowledge you and then look away is even worse, it's like that person is so uncomfortable with your situation or appearance that they can't look at you which isn't really the case it's just people forget how to react normally so don't get upset I'm sure they don't mean to be rude, I then learnt that actually the best way to react to someone is not show any sympathy ( not apathy, you don't want to ignore any one or simply not care about a persons hardship) but you should treat them how you would treat everybody else and the best way to do that is smile, if you notice someone you shouldn't ignore or alienate them, you can't help noticing people so you should use that to make that person feel better, by smiling you're not treating them differently to anybody else, you are seeing the person not the problem and that is the best way to be.

Empathy and Anecdotes

I think I've learnt some important things about life, some of those things are things everyone has gone through and some maybe not too many people have gone through, some things I discovered quickly and some things I didn't understand until recently but wished I had known earlier so I have decided to share my life lessons with people in an attempt to help others with their problems using what I learnt.

I'm still young and have so much to learn, I'm not trying to be some wise old mountain dweller who knows every thing about everything and I might not be much help to any one but if I can prove that no problem is too big or weird and I guess its nice to know that someone somewhere has an idea of  how you are feeling so that would be a small victory if I could at least do that.


 I'm also not talking about how horrible life is or how much I hate it because I love my life and frankly no one wants to hear a rant, especially if you're just scrolling through the internet searching for some answers to a burning question just to find someone complaining about your problem, it isn't helpful is it?

I don't want to make this a boring blog all about sad philosophical story's (although there probably will be a few sad stories) because you learn nice lessons too, also I want this to be a  fun thing to be doing with my time and a fun thing for people to read.

I hope I cleared some things up, thank you for reading.