| ASPECTS |
|
||||||||
|
|
|
|
|
|
|||
Contents
From Joy
A Problem Shared
Top Idol
Talking about TS
Sound Familiar
Web & Message Board
Some of you reading this article may remember the last time I wrote for ASPECTS? It was in December 2000and I was 14 years old. In the article I described how I learned to cope as a teenager with TS. Now, two years later, I am nearly 17 and Lynne has asked me to write a follow-up to that article.
Well, where do I begin? I suppose one thing I did afterwards was to start fundraising for the TSSS. In my school, each year group has what is known as their year appeal. The year chooses a specific charity and has a month in which to organise and hold various fundraising activities. So, the discussions began amongst Year 10 students as to which charity to choose. As all my friends knew about me having Turner Syndrome, I decided to suggest that my form put forward the UK TSSS as our charity to the other forms in our year. I wasn’t really expecting much of a response for my suggestion, in the midst of better known names such as Cancer Research and Save the Children. You can imagine my surprise when all around the room were echoes of "that’s a really good idea", Yeah, we should do that", "That’s a really good cause". Anyway the time came to take the final vote for the charity we were to support. I read out the article I had written for ASPECTS, along with my two best friends, who filled in the gaps and did the persuading to the rest of the Year. The other 3 forms in our year all put forward their charities and then we voted. I was a little overwhelmed and extremely humbled when I realised the vote was unanimous and the TSSS was to be the charity. It made me realise that just because somebody does not have TS, it does not mean they don’t understand and appreciate what we have to go through. In the end amidst all the exciting activities, such as mini Top of the Pops, a cake sale and a House of Horror, we raised over £700 for the TSSS. Obviously I was overjoyed but I was almost embarrassed that people were giving so much money and all because of me! I was no different to them, so why make such an effort? I was so heartened by everyone’s generosity that I would love to fund raise for the society again. It just shows what can be done with a little persuasion.
Anyway I suppose the major thing that has happened in my life since then was my GCSE’s. I knew that I would have to work harder than most to achieve what I wanted to and I was determined to put all my effort into them. I was driven by a desire to prove to myself that I was as capable as my friends without TS. I was especially worried about Maths. When I was in the first three years of senior school I had a bit of a confidence crisis after personality clashes with my maths teachers. They constantly reprimanded me for asking too many questions. I was mistaken for having low confidence in myself, when in fact I needed to ask questions to enable me to understand fully what was going on. My confidence in my mathematical capabilities [plummeted to a record low when I received 33% in my maths exam that first year. However, I was extremely lucky that for the two years of the GCSE course I had a wonderful maths teacher, for whom asking questions was never an issue. In the end a lot of determination and perseverance got me through. I was so delighted when my results came back – 3A*s and 6 A’s. I was even more ecstatic when I saw one of the A*s was in Maths. I have now finally proved to myself that TS shall not and cannot stop me doing anything. My exams have taught me if you want something badly enough you will get it. It might take time and effort to succeed in the way you want, but if you have the courage and determination you will get there.
I am now settled into my A level course in the Sixth Form at my school in Warwick. I’m loving it. I have a Saturday job at my local Boots and am even hoping to start to learn to drive! TS is always in the back of my mind but I have learnt that TS is only a problem if you let it become a problem and if you remain optimistic then anything will be possible.
[Ed’s note – Thank you Joy for this positive article I hope it will help other girls with TS as they prepare for their exams]
Advance Notice:- We are hoping to hold a Teens only Open Day in the near future. If you think this is a good idea please let Arlene know @ TSSS HQ
We asked some of the teenagers for ideas for ASPECTS and one of their suggestions was to have a "Problem Page". Not the type where ‘experts’ answer but one where a teenager could voice publicly [anonymously if they prefer] a problem that they have encountered, for example bullying, trouble with a particular subject at school, making friends, clothes buying etc. Then other girls or even adults who have experienced similar problems could send in replies and possible solutions for publication in the next issue. A similar idea to ‘Question of the Month’ that can be found on the TSSS website. We know that there are no better experts on TS and associated problems than those who live with TS daily. So if you think this a good idea and have a problem that you need help solving please let us know.
We know a number of you communicate with each other via websites that have been set up by individuals with TS or via Chat Rooms. However, we have been made aware of the dangers that can lurk on the World Wide Web and of harm that can be done, especially to young people, when someone enters a Chat Room who is intent on mischief. The dangers have been well publicised of late via the TV & Radio and we feel it our duty to alert you, our younger members, to these warnings to emphasise the need to take care and to protect yourselves when entering a Chat Room. Here are a couple of websites that spell this out.
The Society is aiming to set up a safe environment for this type of communication via www.tsss.org.uk and page 11 gives details.
by Joy
When I was younger I dreamed of becoming a popstar. I loved singing and music and I still do. So when I heard about last year’s Top Idol competition to win a day in a recording studio and a recording of your performance, I jumped at the chance. I hurried along to my singing teacher, armed with music to " Close every door to me" from the West End musical " Joseph" and recorded the track which I sent off.About 3 or 4 weeks later I got a reply telling me I’d won! I was so excited. I’d read that there would be a celebrity coming along on the day to present our prizes. Well, you can imagine the excitement and screams from a 16-year-old girl when she heard that! I couldn’t wait. I concentrated really hard on rehearsing my song for the recording. " Close every door....." was and still is one of my all time favourite songs.On November 29th last year my Mum and I drove down to Basingstoke where we met up with Arlene and Kylie and two other competition winners, Kimberley and Thomas. The next day we got up very early and were driven to Central Studios in Basingstoke. We met Jennifer who had organised the competition and the other 5 winners. We then went for breakfast but I couldn’t eat much as my nerves were starting to kick in. I was a regular viewer of the TV Show "Popstars – The Rivals" I couldn’t believe it when we were told that the celebrities we were going to meet would be none other than Aimee, Linzi, Emma and Chloe from the final 10 girls in the competition. I had spent weeks watching those girls and aspiring to be like them and now I was going to meet them! Whilst we were waiting for them to arrive we went into the recording studios and were given ‘goody bags’. They contained so much stuff, including the Pop Idol CD and the Pop Idol book signed by Ant and Dec. At this point I must say a MASSIVE THANK YOU to Jeff from Pharmacia who sponsored the whole event.Then the moment I had been waiting for – the girls from Popstars arrived and presented us with our certificates. We got their autographs and posed for photos with them. I can honestly say they are some of the nicest and most genuine girls I have ever met. It must have been so tedious answering all our many questions about the TV show, yet they didn’t seem to mind at all. We sat talking to them for ages about TS and they were really interested and willing to listen. I really felt they saw Kylie and me as normal human beings and that’s not something everyone thinks of girls and women with Turner syndrome.Eventually it was my turn to record my song. It was rather daunting at first but once I got over the initial nerves I loved every minute of it. I sang my heart out. The best bit for me was at the end of the backing track when a choir came in on tape and sang behind me. I felt like a real Popstar – it was amazing! Everything about it, the microphone, the backing track, the lighting, the big video screen behind me – magical! I had to pinch myself to check it wasn’t all a dream. It wasn’t though I was living my dream and it felt so fantastic.
We all watched our performances on the big video screen but I couldn’t bring myself to see my own performance. Everyone’s was fantastic and Kimberly’s version of Alicia Key’s " Fallin" was breathtaking. To round the day off we all went out to Pizza Express, which was really good fun. All that remains for me to say is thank you to everyone who contributed towards the Top Idol winners day, everyone at Matthew Poppy, Jennifer, Jeff and Pharmacia, all at the recording studio, the other winners, my Mum for taking the trouble to drive me there and last but not least the Popstar girls who made my year! I had the best experience of my life. Thank you everyone.
[Ed’s note – a truly memorable experience Joy. Can we expect to see a performance of your song at this year’s Conference?]
Congratulations to all of you who have passed exams in the past year and good luck to all of you who will take them this year. Congratulations also to those who have passed their Driving Test we know several of you have – well done.
"Teens and Turner Syndrome – What’s it all about?" A new booklet written specifically for teenage girls with TS is now available. The booklet has been written by Dr Heather Stirling, Consultant Paediatrician and Ann-Marie Mckane, Community Paediatric Sister and sponsored by Novo Nordisk. If you would like a copy please send a large SAE & 4 x 1st Class stamps to the TSSS HQ.
This 30-minute video is yet another dream come true. Several years ago now I saw, whilst on a visit to Melbourne in Australia, an excellent video made by members of the Victorian Turner Syndrome Association. The video showed women and girls with TS, their parents, their partners and their doctors talking about TS and how they all coped. My dream was to have a similar video for the UK. Now thanks to the tenacity of David Bennett of PharmaGenesis, the generosity of the Pharmacia Corporation for funding production, the director Annabel from London Scientific Films, Jeff and Pharmacia UK for funding duplication, the clinicians who freely gave their time and most importantly to the members of the TSSS UK and our sister organisations in the USA and Japan "Talking About Turner Syndrome" is here. Patience is not one of my virtues I have to admit, but this video has definitely been worth waiting for. Who better to describe to those with a new diagnosis of TS what it is like to have the syndrome and live with it on a daily basis, than those who have the syndrome, their families, their partners and the clinicians who care for them? "Talking About Turner Syndrome" tells it how it is. It is both informative and practical and gives an intimate insight of life with TS.We hope that the video will be shown to parents whose baby daughter has been diagnosed at birth, those with a late diagnosis of TS either in their teens or adults and very importantly to those with an in-utero diagnosis that the baby they are carrying has TS. We very much hope that the video will be used for training purposes in medical schools, for students of midwifery, health visiting and school nursing and for genetic counsellorsSome copies will be reserved for loan purposes for members who may wish to view it. There will be a postage & admin charge of £2 or stamps to the equivalent amount for this service. However, if you wish to own a copy please send a £5 donation to the Society. The video will be shown at the Conference and other TS events throughout the year.
I would like to extend a personal thank you to everyone involved in the making of this video. I believe that it will prove to be an invaluable resource for the Society and be of enormous benefit to those with a new diagnosis of TS. Thank you.
The Editor is delighted to be able continue this popular column. It is apparent that members are benefiting from sharing their experiences with others. It takes courage to share painful experiences but in doing so it can give hope to others. Emma has written about her late diagnosis and the effect it has had on her life so far.
My name is Emma and I am 21. I was diagnosed with Turner syndrome at 17 years of age by my GP The diagnosis wasn't quite as simple as that though. I'd been going to my GP since the age of about 14 complaining that my periods hadn't started. She just kept saying wait and let nature take its course.At 17 the doctor measured hormone levels and I had an ultrasound of my uterus. The ultrasound showed a smaller than average uterus and the blood tests showed that I wasn't producing any oestrogen, but we didn't know why.I happened to mention to a friend that I hadn't started periods and she said show me your arms - and she noticed the increased carrying angle (cubitus valgus). She suggested I might have Turner syndrome, like she did (can you believe that, someone else in my class had it!). I then told my GP this, she still insisted on testing my thyroid function first, but eventually got a karyotype (blood test looking at chromosomes) done and the diagnosis was confirmed. This was the point at which I think I felt at my lowest, because I had gone through my life thus far wanting children, and then I was told I would never be having my own child. I was referred to a paediatrician who had a special interest in Turner syndrome, and by the time I went I had found out anything and everything there was to know about TS! The consultant arranged a heart scan, kidney scan, and an X-ray to assess my bone age (which was only 14 despite my real age being 17). Thankfully I didn't have any problems with heart or kidneys which some girls with TS can have. The paediatrician also referred me to a gynaecologist because I was mosaic and had some Y chromosome present; therefore it was necessary to remove my ovaries. That is why it is important for all girls diagnosed with TS to have a karyotype done. I was started on oestrogen, which was built up gradually, and now I am on Prempak-C, an HRT containing both oestrogen and progesterone, which it is believed, will protect against osteoporosis.I think in some ways it was good to be diagnosed later, in my teens, because I went through my childhood not knowing that I had the condition and therefore seeing myself as any other child and trying my best at everything i.e. if I had known that I had TS I might not have tried so hard in maths because I would have thought that I would not do well in it, having TS. It would have been good to have been diagnosed earlier because then I could have received growth hormone (GH) and started oestrogen earlier, but my friend mentioned above had GH and is still shorter than me. I am extremely lucky to have tall parents; I have reached 5' 1" without any help. As for all those old books that say girls with TS can have learning difficulties, in my opinion this is not true! All of us are different, all of us learn in different ways and although TS can influence learning styles, it does not impair how far we can go. Women with TS can achieve whatever they want. I did have problems learning to drive, especially with manoeuvres, but I know with practice I can conquer that. As for intellect, how's this for evidence?GCSEs: 5 A*, 6 A, 1 B & at A level: BBC. I am currently in my final year of a degree in Pharmacy. I am in Mensa Please, please, any lady reading this who is pregnant and has just been told her baby has TS look at what I have achieved, and know that your daughter may have troubles, but she is also going to be special and achieve as much as any other little girl. I have found joining the TSSS of enormous benefit, it is really good to go and meet others who are going through what you are and just to socialise really! There is such a diverse range of women there. Anyway, that's all for now. Please feel free to write to me via the TSSS office
Useful Websites
www.ipsea.org.uk Independent Panel for Special Education Advice
www.portage.org.uk National Portage Association – supports home learning scheme for pre-school children
www.skill.org.uk Provides information for students with learning difficulties
www.drc-gb.org.uk Disability Rights Commission
Don’t forget you can purchase TSSS pens & lapel badges for £1 per item & bookmarks for 50p each to help raise funds for the TSSS
Stephen c/o TurnerSyndrome@tss.org.uk
" The website www.tsss.org.uk
The website is being visited more and more; a new record in January. As a result we are looking to enhance the facilities offered. A MEMBERS ONLY message board will be live by the time you read this. It will be by invitation only. This is to make it as safe as possible. This way the message board is only accessible by the members and if any member causes problems, we are able to quickly ban their using the board.
If there is anything else you wish to have added to the site please let me know.
Home | What is TS ? | Information | About Us | Links | Latest News
All web pages copyright © TSSS(UK) unless otherwise stated. Please read our copyright and disclaimer page