Noonan Syndrome (NS)
Support Group Introductions
Well I’ve finally got down to writing my introduction, even though I have been in contact with the group for over 1 ½ years now!
I am 19 years old and was born in Brussels. I was a prem. baby.. born by caesarean at 32 weeks. I was born with a hole in my heart, mild PS (which I still have), ptosis, strabismus. They didn’t operate on my heart till I was 4 years old when they closed the ASD I had. I also had a series of operations for my squint and ptosis.
The early years were very difficult naturally. I apparently was a very stubborn baby that would not eat and would be sick! I was bad with lumpy food as well (?!) Those first few years I was sick quite a lot with ear infections and tonsillitis, bronchitis etc. etc. I was also very short, and low weight was a problem. I did half days at school for a couple of years because I tired out so easily tired out. Later on I was still having loads of infections and lots of time off school but I was having less feeding problems and was getting myself ‘sorted out’ in the means of more eye operations. I also had a very low stamina especially when carrying out physical exercise (which I still have problems with!) I had problems at school with concentration and bullying but I pulled through and passed most of my exams.
It was 2 years ago now that NS started to become a familiar term when I was diagnosed in Belgium. We did not have a clue what this was but I set out to find out! I was in denial for a long time. It was then I found this amazing group. Wanda you are a saint!
Last year I was seen by the team at St George’s Hospital in London, who confirmed my diagnosis as much as they could without a test. It was then really that it completely sunk in. On the medical reports it states that I have lots of the NS facial features, which I was quite unaware of. I also have scoliosis, lordosis, mild chest deformity (though only very mild), cubitus valgus (elbow deformity) ,poor muscle tone (especially in my tummy), poor co-ordination, long sightedness and short sightedness, anti-smooth muscle auto-antibodies, poor circulation, very curly dry hair and tendency to bleed (loads of nose-bleeding episodes!)
I don’t know what I would have done without TNSSG. I am still battling with some problems I have because of the NS, mainly my back problems and muscle problems (though only mild).
Although I have all these problems I consider myself to be very lucky as I have only a mild case of NS.
I don’t know if I have included everything , but I have written a lot so I better close now!
Thanks guys for everything.
Michelle Ellis (29/02/80)
The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.