|
|
|
"No act of kindness, no matter how small, is ever wasted"
You can join the TNSSG group or our cause on FACEBOOK
|
Hello this is Michelle UK Hi, I am Michelle and live near London, U.K, but I was born and lived most of my life near Leuven, Belgium. I was diagnosed with NS when I was 17 (1997) when i went to a cardiological check-up, the Cardiologist said 'Have you ever heard of NS?' We had no clue! Up to the genetics department for us (no waiting, just a phone call and we were seen minutes later), and the diagnosis was confirmed. Hey, I was only expecting a heart check-up and here I am being dxd with NS!?! Luckily (I do not say that lightly), I found Wanda and TNSSG very quickly, and found my second 'family'. I researched all the features of NS, and I found myself nodding away at almost all of the features. I had not only found answers to my medical problems, I had found answers to ALL of my medical problems and other problems also. I always knew I was 'different' than my peers, my medical problems, my problems at school, even problems working. I say that day was the best day of my life, but it was, because I had ANSWERS, and of course I found my other family. I have been so lucky to attend 4 TNSSG conferences in the Baltimore, MD. I was a preemie, only by 7 weeks, but 7 weeks 28 years ago was quite a lot! Very quickly the heart problems were noted (up until i was dxd, we only thought I had the ASD, but realise how I also had the pulmonary valve stenosis and a few other minor heart problems to boot) and they wanted to operate immediately. My parents were having none of this, and they found a second opinion who said waiting until i was much stronger, would be a MUCH better way to do things and they would operate when I was around 4 years old. I duely had this surgery which went very well. I also had the 2 of many eye surgeries that year ( well all in I think 4 months - my poor parents!!). I was a very sickly baby and also a sickly toddler. I got every bug going and you bet every bug went to the lungs and ears and throat all together!!. I only understand HOW patient my parents were with feeding, now I have met other parents. I would definately have had a tube if I was born in this age! I started school, who were very understanding about me having to take rest breaks and naps when i needed to. Then I joined a different school when i was around 7. Yes, I did have a very tough time at school, by the kids, but also by the teachers, who were often worse than the kids with bullying! I also found the work tough, and was just called 'lazy' by many of my teachers - of course I hadn't been diagnosed then. Also having to take lots of time off for surgeries, hospital appointments, never mind when I was sick also made things worse. BUT, you know what? I PROVED THEM WRONG!! I passed 8 GCSE's with flying colours. I don't know who was more surprised, me, or my teachers!! I then did the college thing, then the university thing and have had 2 permanant jobs since I left Uni in 2001. Have had a few problems with my employers due to my disability, and the amount of surgeries I have had. My heart, luckily, is now pretty stable. I still have the thickened, pulmonary valve, and a few other minor heart problems. I have had many eye surgeries, orthopeadic surgeries, gynae surgeries etc etc ( I think around 20 in all). I had a life threatening surgery complication last year and am still recovering from that. I have many of the NS symptoms/features/associations. I also have problems with my joints, bleeding, muscles, scarring, eyes, autoimmune problems- etc etc its a bit of a list so I wont go into it all here!! I have skipped a heck of a lot of my medical issues and living with NS here, but I hope this gives you a flavour! I have learnt to embrace the NS diagnosis. NS isnt ME, but its PART of me, PERIOD. NS doesnt define me. However, I wouldnt be 'me' if I didnt have NS. Yeah, NS can be a awful to live with at times, but I can truely say that I feel a better person for having NS, meeting others with NS and living with NS. I have also met some truely wonderful doctors - even Dr Noonan! I was bowled over how caring, gentle and friendly the doctors I met at the TNSSG conferences are.I am sure I am a stronger person beacuse of it. I have also met soooo many of my 'sisters & brothers' and been able to take part in the conferences and also on the ListServ. I have met very many truely imspirational familes and people who I am proud to call friends from this group and I am so thankful I clicked my mouse on TNSSG all those years ago.
|
