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Contents
The TSSS are joining the Silicone Wrist Band Craze
RESEARCH
Your Letters
YOUR STORIES
TRANSITIONAL CLINICS
AGM
New Education Booklet
Answer Website
Hospital Packs
Bullying
Speech and Language Development
Adult TS Checks & Clinics
The Great Weather Lottery
Mufty Days !!! by Jane
We have ordered 5000 Purple Silicone Wristbands with SMILE on them. We will sell them for £1 each. You can place an order for them on page 15. We have deliberately not put TSSS on them as we appreciate that not everyone is comfortable with people knowing about their Turner Syndrome. We felt that if you were quite happy to sell them and promote the TSSS at the same time you could have a poster stating that you are selling them in aid of the TSSS, you could hand out an information leaflet about TS or you could just say you are selling them for charity which you are. We felt that in this way we would be giving everyone a chance to fully participate. I have seen lots of doctors and teachers wearing wristbands - perhaps you could buy one and send it to your favourite Pop Star or TV Personality?.
The Turner Study is still in progress and an update will be printed in the next edition of ASPECTS.
Dr. Julia Ostberg has been working tirelessly on her research work into Heart Disease in Women with TS. We hope to have an update for you in the next edition of ASPECTS.
A research project has just begun which is looking at the benefits [or lack of them] of routine measuring of school age children between the ages of 4 and 11. As always the Society is keen to be involved and we are part of an advisory group to this project. What would be helpful to know from you is:-
a] were you or your daughter diagnosed with TS as result of short stature being picked up by routine measurements taken in school?
Or
b] Were you or is your daughter measured routinely at school?
If you have answers to either [a] or [b] could you please let Lynne know by emailing Turner.Syndrome@ tss.org.uk or telephoning her on 01353 654000. Thank you.
ASPECTS is always pleased to receive letters from our readers. We welcome letters on any subject so why not give us your views and comments??? Come on – let’s start some healthy debate.
To the Editor of Aspects
I went to the TSSS meeting in Gateshead , Tyne and Wear in March 2005 with my daughter Mellissa who is 8 years old yr old and has TS. We took her little sister Taylor (aged 5) along as well. I was a little bit worried about meeting TS girls and women older than Mellissa was as I was worried about how Mellissa would look as she develops from a child to a teenager and then to an adult.
It was lovely to see so many teenage TS girls. They were all very pretty and so "normal" looking. I only knew they had TS because they were at the meet up but none of them would stand out in a crowd as being "different" to other girls. The women with TS were the same - none of them stood out as being so different to other women.
The meeting also opened my eyes to some of Mellissa’s little ways such as being a little forgetful. It is not her fault as it can just be part of having TS.
A lot of the day went over Mellissa's head because she was more interested in having fun with the other girls than in the "serious" side of things but it helped me a lot.
It has been rather hard to come to terms with Mellissa having TS but through meeting others with the same condition my eyes have been opened to the fact that we will all cope with it.
I have always felt that I am lucky to have Mellissa (especially as I miscarried a 13 week baby less than a year from Mellissa being born) but I feel in a way that she's more special now. I can't explain that properly in words but parents will know what I mean.
from Cheryl (Mellissa's mother)
Hello, my name is Hannah. I am 17 years old. I was diagnosed with Turner Syndrome about 2 years ago. Since then I have tried to come to terms with it as it was such a shock.
I am now loving life and helping out in any way I can. Recently a friend of mine told me she was raising money for her charity by making gift tags for Christmas. I loved the idea and immediately thought about raising money and the awareness of Turner Syndrome.
I put in a little bit of information about Turners Syndrome in the gift tags packs so that people would understand and I answered any questions raised. I eventually raised £20 from selling the tags and I intend to beat the target this year.
I had a great time raising money and raising awareness and I was astonished at the amount of people who did not anything about TS. From Hannah.
(Ed’s Note: the stories of individuals affected by TS are always well received by ASPECTS readers. We are extremely grateful to Cheryl, Mellissa, Hannah and Laura for allowing us to print their stories in this edition. We hope their experiences are of interest to you all).
In 1996 I found out that I was pregnant with my second child. My first pregnancy had been rather straightforward but for some reason the second one felt different. I always felt something was "not quite right" even though medically everything seemed fine.
At my 20 week scan the doctor doing the scan suddenly went quiet. My heart was racing and the tears were starting already. He excused himself from the room saying he had to talk to another doctor and a nurse stayed with me as I was sobbing by then. The doctor came back in the room and by then I was hysterical shouting “What's wrong with my baby?". The doctor told me that my baby had a problem with it's head (a swelling at the back of the neck) and he wanted me to see a specialist in two days time.
Those two days were awful but they went so quickly. At the time my way of thinking was that until I was told otherwise my baby was fine. I clung onto that hope.
I was rescanned two days later and the doctor said that he considered that the swelling was nothing major and would be gone in the next four weeks. He offered me an amniocentesis but said that in his opinion I was more likely to miscarry due to the amniocentesis than have a problem with the baby - but that it was my choice. I decided against the amniocentesis but even then never felt that all was well with the baby.
In December I went into labour just before my due date. I got to hospital and shortly after my waters went the baby’s heart rate dropped really low but after just two pushes I gave birth to a little girl at 3.44 in the morning. Immediately the midwife was concerned that the baby was only 5lb 15oz . She had a very small umbilical cord and a small placenta and she also had really swollen feet. The paediatrician was called and she said she suspected Turner syndrome. She said to me "Don't worry it's not life threatening" which still filled me with horror as I wondered what life would be like for my daughter. I named her Mellissa,
She was quickly whisked off to the special care ward and I was left feeling so lonely and confused. All through the pregnancy I'd had a weird feeling that my child would have problems but here I was with something I'd never heard of and it really frightened me.
I tried to distance myself from my daughter as I was too afraid to love her for fear of what her life would be like. I couldn’t do this though as the love had formed months before hand while I was still pregnant. Mellissa was such a slow feeder that I would sit in the SCBU feeding for hours at a time. All the time Mellissa would look at me with her gorgeous big blue eyes.
I was discharged from hospital after two days but Mellissa stayed in. I then made the big mistake of looking up TS in the library. I saw an awful picture of what my child could look like and saw the words "usually mentally retarded". I lost my self-control then and I became so distraught.
I went to see the doctor at the hospital and he assured me that Mellissa would not be like the books in the library had said. Three days later I took her home - just in time for Christmas.
Mellissa was such a lovely baby but she was constantly sick. She could throw sick right across a room at times. She slept well from just a few weeks of age (Wow – was I lucky there!) but as she grew and went onto solids the trouble really started. She hated most foods and lived on milk, fromage frais, beans and spaghetti until she was two years old and she would still projectile vomit most days.
Mellissa never sat unaided until just after her first birthday. She walked at 17 months just in time for her 18 month health check which she sailed through. Her speech was always way ahead of what was expected for her age. One day the health visitor popped round and as she left she said "bye bye" to Mellissa. Mellissa chimed in with "bye bye shut the door" as clearly as anything and the health visitor was stunned!!
From the start Mellissa had a very slow weight gain even though she was only 9lb 12 oz at six months old. That was the hardest thing at that time as so much fuss seemed to be made at the baby clinic about weight. I went every week to get her checked and would get upset if she'd lost weight or not gained it. Her doctors were great though and they helped us all the way.
As Mellissa grew up things got easier and she was always such a happy little girl. She had such beautiful blue eyes and long thick eyelashes that would make any woman envious. She started at mainstream school and settled in well.
Mellissa is now 8 years old now and doing very well. She has a little trouble with maths at school but her reading is way ahead of her age. She is very good in gym lessons but her writing is a total mess. However, as far as Mellissa is concerned SHE knows what it says so that's all that matters! The internet has been a godsend to us. I found a chat forum all about TS and started posting on there. It helped to talk to other mothers of TS girls and women with TS. One day someone posted a message about a meeting in Gateshead which is close to where we live. I emailed the lady and she told me to get in touch with the TSSS and get details of the meeting from Arlene. I got the info I needed and in March 2005 attended the meeting with Mellissa and my youngest daughter Taylor.
I was a little bit worried about meeting TS girls and women older than Mellissa as I was worried about how Mellissa would look as she develops from a child to a teenager then to an adult. It was lovely to see so many teenage girls with TS. They were all very pretty and so "normal" looking. I only knew they had TS because they were at the meeting but none of them would stand out in a crowd as being "different" to other girls. The women with TS were the same - none of them stood out as being so different to other women. That meeting also opened my eyes to some of Mellissa 's little ways - such as being a little forgetful. It is not her fault it is just part of having TS.
A lot of the day went over Mellissa's head because she was more interested in having fun with the other girls than in the "serious" side of things but it helped me a lot. It has been rather hard to come to terms with Mellissa having TS but through meeting others with the same condition my eyes have neen opened to the fact that we will all cope with it.
I have always felt that I'm lucky to have Mellissa (especially as I miscarried a 13 week baby less than a year from Mellissa being born) but I feel in a way that she's more special now. It's nothing that I can explain but I'm sure other parents of TS girls will know what I mean. Mellissa has this ability of making everyone happy. Her teachers often comment on what a determined little girl she is. If she does find a task hard at school she does not let it worry her too much.
In my opinion Mellissa sees life as fun and not to be taken seriously. She's been put on earth to have as much fun as she can and make life fun for others and with that attitude she will do well in life.
from Cheryl (Mellissa's very proud mother) x
When I get my copy of ASPECTS I flick through to find any personal stories as these are what I enjoy reading. Therefore I thought I would write my own personal story, and hope others reading it will find it interesting.
I was diagnosed with TS at age 13 due to a lack of development. Despite initial doubts I am well on the way to achieving many of my goals. I always wanted to work with children and am currently in my second year of teacher training at university in Canterbury. Before stating uni, just like everyone else, I was unsure how I would cope living away from home and all that this would entail. On moving into student halls and starting my course I made a great number of friends with interests similar to my own and thoroughly enjoyed the first year of the course. The course involved a teaching placement and after successfully completing this I was 100% certain that I was doing the right thing – teaching is definitely perfect for me.
I am now in my second year at Canterbury and living in my own little place that I rent with a friend on the same course. It was slightly daunting at first dealing with different bills and things that come with renting a house, but I am now settled into the routine and I am not sure why I was so nervous about things to start with. I am making full use of my new found independence, with numerous cinema and shopping trips to Canterbury and some of the surrounding towns. My second year teaching placement built on the success of the first and without really realising it I was teaching 26 four and five year olds for 50% of each day.
I am now looking forward to my third and final year at uni and then getting my first job and my own class. I have come to realise that, although important, TS does not need to dominate my life or inhibit me in any way from achieving my goals.
Hi Guys,
My name is Laura and I have Turner Syndrome as well as another unrelated syndrome. I have recently joined TSSS and it has been a great help to me. I wanted to share my story with everyone – I think women and girls with TS and parents will relate to it all.
I was born in 1983 and I have two sisters and one brother. My mum says I was the quickest birth but sadly hard times followed. The minute I was born there were 20 doctors surrounding me and my mum and the doctors eventually took me away for checks. My mum never got the chance to hold me at first and was understandably hysterical. The doctors first told my mum that I was brain damaged and they then thought that I had Down’s Syndrome.
As time went on my mum said I was doing everything every other child was doing and she wanted a second opinion so they sent my mum and me to Glasgow where they diagnosed me with Turner Syndrome and another syndrome within minutes of getting there. The other syndrome that I have is rare and is like a bone disfiguration which is why the doctors initially were unsure about what I had. All of this happened in the first two years of my life. The doctors and nurses who were treating me knew nothing about my problems at the time and that’s another reason why I was wrongly diagnosed.
For years after that I spent my time going to hospital with my mum seeing around six different specialists every year. They were my paediatrician, my TS specialist, my ENT specialist, my dentists and others so I always had a lot of appointments. I was never told about my TS or my other syndrome. I was always sent out of meetings and everything was only told to my mum.
When I was about eight I was put on growth hormone. When I started on it I was slim and skinny but I soon put on weight and by the time I was in year seven I was fitting into size 16 clothes. By the time I was 14 I had stopped growing and I stopped taking the injections. The weight then dropped off me and I am now a size 10. In school I had a lot of trouble with being slow at things but I got there in the end. I got bullied and was sometimes called names but I did not let that affect me.
After school I went to college and my life changed. I was doing a care course and I made lots of friends. College was also where I met my first boyfriend. Of course it didn’t last but it made me feel much more confident.
I work as a support worker now which I feel is what I have always wanted to do. I am now happily engaged to a guy called Chris and I am happily in love. He, my mum and the rest of my family have been a great support to me.
Just writing about what has happened to me in the last twenty years has helped me and I hope that what I have said can help others too. To all girls and women with TS out there - we are very special.
ASPECTS is always delighted to receive advice and tips from our readers about everyday living with TS.
We are pleased to include the following piece from Claire who lives in Barking, Essex. Thank you Claire for sending your piece to us.
Hello. Turner Syndrome patients can sometimes have difficulty in holding their arms out straight. To reach certain parts of my back when it itches I get by using a ruler, letter opener, back scratcher or anything along those lines.
I do find it hard, however, to reach some areas of my back to put cream on. I do get dry, which is probably connected to the hormone problems I have as a result of TS. To help me get over the problem I got a long handled item from Betterware sometime ago, used it no more than about a couple of times and the sponge to put the cream on fell off!.
I want to avoid if possible relying on someone else like my partner to do it all the time. I try with my arms and I do try and put oil in every bath but I have still not found anything which will let me put cream on all areas of my back myself. If any ASPECTS reader knows of something I could use it would be appreciated.
I look forward to hearing from you. You can contact me via TSSS office or via ASPECTS.
Thank you.
Claire
Your comments please.
The British Society for Paediatrics and Endocrinology [BSPED] are looking at ways to improve transitional care for adolescent girls with TS from paediatric to adult clinics. If you have any experiences good or bad of how transitional care affected you or your daughter we would like to hear from you. For instance were you or your daughter just signed off to GP care; did you have no trouble with the switch to an adult clinic; have you any suggestions that would improve this important area of care?
If you have any comments to make on this subject please let us know by either emailing:
Turner.Syndrome@ tss.org.uk or telephoning Arlene on 0845 230 7520. Thank you
In accordance with the Constitution and to comply with Charity Law notice is hereby given that the 7th Annual General Meeting of the Turner Syndrome Support Society [Reg Charity 1080507] will be held on Saturday 1st October 2005at 9:15am in the Dunes Conference Complex, Pontin's, Blackpool.
Agenda:-
Minutes of last AGM
Chairman’s Report
Treasurer’s Report
Election of Committee
AOB
Written questions for the AGM should arrive at the TSSS office no later than Friday 23rd September 2005.
Nominations for Committee membership must reach the TSSS office by 2nd September 2005 and in writing please. If you would like to become more involved with the workings of the Society but do not wish to become a fully fledged Trustee or Committee member the Committee would still like to hear from you. There are always areas where your help would be much appreciated. This is your Society and your involvement and opinions are important.
As previously reported the newly updated Education Leaflet is ready. It is an excellent information leaflet for teachers and parents alike. It is a must for every girl who has Turner Syndrome. You can receive your copy of this excellent booklet by sending a cheque for £1 or 4 loose 1st class stamps to cover postage and packing.
The Answer website provides Antenatal Screening advice and is well worth a visit. Answer offers pregnant women and their partner's information about the screening and diagnostic tests available in pregnancy and information about some of the conditions that might be detected by antenatal tests. The site also contains personal testimonies from individuals and their families directly affected by these conditions. The site also provides links to support groups and other useful websites.
Please remember that TSSS have prepared Hospital Packs for the use of all doctors and specialists. The packs contain current up to date information on TS. If you would like a copy of the Hospital Pack please contact TSSS office.
For information on bullying we recommend the following websites:-
www.dfes.gov.uk/bullying/parentsandindex.shtml
This website offers the ‘Don’t Suffer in Silence’ feature, resources for parents, children and teachers to combat bullying in schools.
www.childline.org.uk/extra/bullyingindex.asp
This site provides anti-bullying resources, top ten tips, diary and information sheets.
Expert information on speech and language development and communications difficulties in children can be found at the following website:-
This site offers a great wealth of valuable and practical advice and information produced by I-Can, Afasic and the Royal College of Speech and Language Therapists.
The Society has produced an information leaflet for women with TS who do not attend a specialist TS Clinic. The leaflet is for guidance only but outlines the health checks that women need and the time span for these checks.
We know that many women with TS are still only seen by their GP and with the best will in the world GPs cannot be expected to know everything about TS, the possible treatments and the checks which every woman with TS should be having throughout her life.
This situation has arisen because not so much was known about TS and once a young girl reached 16 she was signed off to her GP and more often than not told to come back when she wanted to have children!
Sadly, although much more is known about the condition now and more health issues related to TS have come to light, there are still women who do not know that there are specialist TS clinics around the UK and more importantly the health checks they should be having. GPs also need to know this and the leaflet has been designed for both patient and GP so that an informed decision can be made about future care.
If you think you should be having these checks and are not or if your daughter is about to leave paediatric care then this leaflet is for you and your GP.
The leaflet also contains a list of the specialist TS clinics currently available. There are not as many of these clinics around the country as we would like but we are working with the clinicians to try and set up more.
Our aim is that eventually every woman with TS will be able to obtain the specialist care she needs for a healthy life. We will keep you updated on this issue in future editions of ASPECTS. If you need further advice or information please contact the TSSS office.
This is a lottery that we would like you to consider entering as it guarantees income generation for the Society. It costs no more than a £1 a week and you could win up to £10,000.
It is easy; all you have to do is match the daily temperatures in 6 cities as reported in the Daily Telegraph. Match 3 numbers and you win £2, 4 matching numbers win £20, 5 to win £200 and all 6 to win £10,000. You can enter for 13, 26 or 52 weeks. Entering couldn’t be more simple so go on take a chance and help raise funds for the Society the easy way! Forms are available from TSSS office. If you would like to enter please send a SAE to the office.
When did you last have a Mufty Day???? Well that’s what we call them in Leeds!! Confused?? Well, a Mufty Day is when you wear your casual clothes to work or school and you pay for the privilege.
If your company or school would be happy to have a Mufty Day where would the money go? I work for Expotel Hotel Reservations and we have 12 nominated charities which we support by raising money through Mufty Days and other fundraising events. We have nominated TSSS as one of our charities and we are pleased to confirm that we have already raised monies in this way for the Society. Every penny helps so please ask about nominated charities at your workplace or school and if they don’t do Mufty Days at present perhaps you could persuade them to start with TSSS being the benefitting charity!!
It isn’t only a money spinner it also raises the profile of the TSSS so it is a double whammy!!
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