Turner Syndrome Support Society Newsletter © Charity Reg No. 1080507 Scottish Charity No SCO37932 Volume 5: Issue 2: March 2012

------------------------------------------------------------------------------------------------------------------------ Mail address: Turner Syndrome Support Society [UK], 13 Simpson Court, 11 South Avenue,

Clydebank Business Park, Clydebank, G81 2NR. Tel 0141-952-8006 Fax 0141-952-8025 e-mail Turner.Syndrome@tss.org.uk website www.tss.org.uk

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RISING STARS!

CONTENTS Chair’s Message............................................................................................................... Page 3 Arlene Writes.................................................................................................................. Page 4 TSSS Open Days ............................................................................................................. Page 6 TSSS 50/50 Club ............................................................................................................ Page 7 Mrs TSSS Reports.......................................................................................................... Page 8 Young Adults Report.......................................................................... ............................. Page 8 Teens Report.................................................................................................................... Page 9 My TS Life- Val and Kacey’s Story – Part 1 ............................................................. Page 9 A Letter of thanks ......................................................................................................... Page 13 Fabulous Fundraising ...................................................................................................... Page 14- 15 Donations List ................................................................................................................. Page 16 TSSS Christmas Party .................................................................................................. Page 16 TSSS Family Fun Weekend .......................................................................................... Page 17 Scottish Group ............................................................................................................... Page 19 Trustee Announcement................................................................................................. Page 19 Claire’s Story .................................................................................................................. Page 19 Helen’s Story .................................................................................................................. Page 20 Oxandralone Update ...................................................................................................... Page 21 Foot Research Project................................................................................................. Page 22 Central England Friendship Group Update .............................................................. Page 23

IMPORTANT DATES

Medicine & Me, Turner Syndrome in London 6th March 2012 at the Royal Society of Medicine in London BES Conference in Harrogate 19th -�22nd of March 2012 Turner Syndrome Awareness Day 21st June 2011 Family Fun Weekend at Park Hall Hotel, 18th – 20th of May 2012 TSSS Open Day in Rugby Warwickshire on Saturday the 23rd of June 2012 at Rugby High School- details on website. FSI Challenge- 30th June 2012 ESPE Conference Germany 20-23th September 2012 TSSS 12th Anniversary Conference 12-14th October 2012 at Park �all Hotel, Chorley Lancashire BSPED Conference Leeds 7- 9th November 2012 International Conference- Japan- 23rd - 25th November 2012

COVER STARS The cover stars for this edition of ASPECTS are our Faith, Libby, Molly, Grace and Bea

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Editor’s Message by Joy

Hi everyone! Hope you’re all well and are settling into 2012 nicely. As always life has been busy here. Just before Christmas I was interviewed and successful in my application for a secondment at work for my boss’ job. For anyone who doesn’t know a secondment is where you go off on a temporary basis to do another job, usually as a move to further career development and also it is usually on a higher pay scale. So since January and until September I am officially a PA to a Director and two Heads of Service at the Council which is very exciting but very busy. It has been a very steep learning curve but one that I am really enjoying and relishing. It is nice to feel like I have a sense of ownership and responsibility over my work and I do feel that my work is a lot more appreciated in my new role which has done a lot for my confidence. Christmas was relatively quiet- I went to my Mum’s and then was back in Sheffield for New Year. It all seems a long time ago now though! Since late September I have been on a get fit regime and self imposed diet in order to lose weight and get myself feeling a bit more healthy. It has been hard but so far I have lost a stone and a half of my two stone target so hopefully I shall get there soon. I’m very lucky in that I have the beautiful Rother Valley Country Park on my doorstep so I go out on my bike round there but with the winter months I’ve rarely been able to get out as it’s been too dark by the time I’ve got home. I’m hoping now that the spring is on its way I shall be able to get

out more regularly in a bid to lose that last half stone. In early February I celebrated my 26th birthday by going to London with some of the girls to see Ghost the Musical which is based on the film of the same name. It really was stunning and we all really enjoyed ourselves. There are also lots of exciting things in the pipeline that I am looking forward to including Ellie’s 21st, Leeanne’s hen night and her and Ryan’s wedding in May. My friend Fiona is also getting married in April and last weekend I was on her hen weekend in York which was good fun although I did feel like a rather old woman the next day! A few of the girls haven’t been well lately so I’d just like to take this chance to send Helen and Meg big Joysie hugs. Your bravery is an inspiration to all of us and I hope you both get properly better soon. Anyway there is plenty to get on with in this issue as ever� so I shall wrap things up now. I hope you are all ok and please keep sending me in your stories- we love to hear about what you’ve been up to and if you have any ideas for things you would like to see in AspecTS then please let me know. Hopefully we shall also be starting an e-newsletter in the not too distant future- more details about that will be available on the website when we are able to confirm them. Take care everyone and hope to see you soon. Lots of love Joy xxx

Chair’s Message by Hayley

Hello all and welcome to this latest edition of AspecTS. I hope you all had a lovely Christmas and

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New Year, although I must admit it all seems a long time ago now! Jim and I spent the festive season with his family in both Cwmbran and Peterborough and had a lovely time not only celebrating Christmas but our granddaughters 8th birthday � Your committee met in January to do the annual planning for the society for the year. Look out for more details further on, on all the excellent things coming up. Suffice to say we have many fun things packed into this year, from open days to family fun weekend to FSI challenge to of course the “Piece de la resistance” our annual conference. I hope to see many of you throughout the coming year to catch up. The FSI challenge was launched in February and takes place in June. I hope to be able to make this again as it was a great day/weekend last year and we raised a lot of much need funds for the TSSS. If anyone is interested in doing this 4k/10k walk/run please either contact myself or the office for details. This years Saturday night conference theme is “DIVAS”. We have agreed on Lady GaGa's “I was born this way” for the older women. Lyrics are available on you tube/TSSS website and we hope as many Ladies with TS as possible will join in. Rare Disease Day this year is the 29th February (a rare day!). The day this year concentrated on media cover rather than the official receptions that had been held in previous years. The 50/50 club was re-launched in January. The 50/50 club runs from January – December each year and costs £1 per number, per month (there is no limit to how many numbers you can have entered each month). 3 lucky numbers are drawn each month by an independent selector and the prizes are split 50/50 (50% goes to TSSS and 50% is shared between 1st (50% less 2nd and 3rd prize), 2nd (£12) and 3rd (£6). Please contact Jim Cleaver (my hubby) or the office for an application form and standing order form to be included in the draw and please tell all your friends. The Wales Friendship Group met up at in February in Abergavenny. It was a great opportunity to enjoy a lovely lunch, do a bit of shopping, share experiences and just generally blow away the Christmas blues.

Look out on the website and face-book for future dates. I will also be trying to organise an older ladies meet up perhaps April/May time. Again look out on the website and face-book for details. Well I’m going to finish now and let you read the rest of this fantastic newsletter. I hope to see many of you over the course of the year. Take care Hayley x

Arlene’s Report Well it is 2012 and as always it looks like it will be a full on very busy year. As I turn 50 at the end of this year I suppose I can justifiably say “where does the time go?” I hope this newsletter finds you all well. I think this year is going to be a difficult one for us all. Together we will get through it and before you know it will be conference. We have just had the TSSS planning meeting, this is where your trustees and committee members plan out the various events taking place throughout 2012. This year we have a couple of special events, Medicine & Me on the 6th of March 2012 a rare opportunity to listen to the expertise of some of the top UK specialists in Turner Syndrome and real life experiences. This event is free to patients and will be of interest to both patients and medics alike. Plus this year the International Conference will be held in Japan on 23-25th of November 2012. I will be attending and we are hoping that we can fundraise to allow a delegation from the TSSS to attend. If anyone is interested in possibly coming along please contact me at the office and I will let you have all the information I have. You can visit the conference website on https://www.turner-japan2012.org and keep up to date. We had a lovely family Christmas and Emily had a wonderful time playing with all her lovely gifts on Christmas morning. Carlene is a brilliant Mum and is doing a great job bringing Emily up.

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Charlie enjoyed all his presents too he is spoiled rotten. You can see from the pictures how cute he is and how much Kylie loves him.

We have been checking the database and many of you have not updated your standing order. Please make the amendments ASAP to increase your membership standing order by the 1st of June to £30 per year or £3 a month if you prefer. Please keep your membership up to date. It is very important that you notify us of any changes to your address, e-mail or telephone number, thank you. We are currently suspending memberships that are not up to date until we receive confirmation. If you have received an e-mail or phone call from Carlene or myself please support us by responding ASAP to us. We realise this is just an oversight by most of you. But, one we need your help on. It is great having Carlene back in the office we are getting so much done now she is in 4 days a week. I so appreciate all her hard work catching up on filing, printing and bringing the database up to date. She works very hard keeping track of all the wonderful Just Giving Donations, sending out thank you letters and certificates to all our fantastic supporters. Kylie managed to get some leave from work and came along to help me when we attended the BSPED conference in London in November. It was a good conference and well worth going, it is an excellent opportunity to meet up with Paediatric

Endocrinologists and Endocrine Nurses from throughout the UK. It was especially nice as we got to see Lynne Morris who popped in to say hello and see how we were all doing. Our thanks to Susie & Stephen for excellent B & B in their lovely new house on our way to and from London & Wiltshire, my personal highlight was attending the Remembrance Day parade in Carterton. As Geoffrey was the Mayor’s cadet he marched in the parade and laid a wreath at the war memorial. He look so smart in his uniform and Melissa marched with her brownie unit we were all so proud of them. It was a very touching moment standing paying tribute to many service men who gave their lives for us, so many of them young men. We had a brilliant Open Day in Wiltshire in November our thanks to Ali, Matt and Meg Andrews for all their help in organising the venue and providing the food. It was a super venue and everyone enjoyed meeting up. We were lucky enough to have Dr Justin Davies Consultant Endocrinologist, Pauline and Steph Endocrine nurses all from Southampton along to chat and answer questions. It was so good of them as they had spent part of the previous week at the BSPED conference. We thank everyone very much. Our thanks to our benefactor companies Ferring, Ipsen, and Novo Nordisk & Pfizer who help us to deliver services to our members, their help ensures we continue to offer support and information to members throughout the country. We very much appreciate their support through unrestricted educational grants. Thanks to all our hardworking fundraisers who continue to raise vital funds in this most difficult of economic climate. PLEASE, PLEASE remember to register with www.easyfundraising.org.uk then select Turner Syndrome Support Society/ TSSS as your chosen charity and we will earn anything up to 15% commission on each purchase made. Then every time you shop online visit easy fundraising first, then link to the shop you want. This is a great way for you to support the TSSS without spending a penny. Please ask your friends and family to use it too. www.easyfundraising.org.uk Best wishes Arlene x

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Local Friendship Groups We have a number of local friendship groups running in different parts of the country. To be kept up to date with all the events that are going on locally please check the website, each group has its own page www.tss.org.uk Or contact the office and we will post you a copy of the information. There are plans to start up a few new groups too.

Members Contact List 2012/ 2013 We have decided to print the list as it is. We know more people want to be included on the list but, unless you complete and return the permission form and are a up to date member we can’t include your name. The list of members wishing contact is available from the office on request either by e-mail turner.syndrome@tss.org.uk or phone 0141 952 8006. The new contact list is now available from the office by post or e-mail We need an up-to-date e-mail address and phone number for all members; please can you send Arlene your details so that the database can be kept up to date. Your support is much appreciated.

Open Day will be on Saturday the 23rd of June 2012 from 11am till 4pm. Venue TBC. To put your name on the list for a place e-mail turner.syndrome@tss.org.uk or call Arlene at the TSSS office.

We hoping to host an Open Day in Wales somewhere between Cardiff & Swansea perhaps Bridgend details will be on the website as soon as a venue is confirmed.

A joint open day will be held in Newry with the Dublin TCGI group. A full report will be on the website and in the next newsletter

The TSSS website is now up to date and to keep it current we are adding a photo gallery, downloadable fact sheets will be added as and when they become available, plus lost more. Please keep checking to see what’s new on www.tss.org.uk please let us known what you think?

The TSSS Facebook group is now open to up to date members of the TSSS only. Everyone has been given the opportunity to join the updated group. To join the Turner Syndrome Support Society Official Group just search for our name via Facebook. There are a number of trustees who are regular users, please remember the TSSS can accept no responsibility for other Facebook users comments. If you are concerned about a posting please let Arlene or any of the Trustees know and we will do our best to help. If you want to ask Arlene a question please e-mail her at Turner.Syndrome@tss.org.uk directly for a prompt response. Facebook messages are not given priority and answered only when Arlene has time.

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MEMBERSHIP REMINDER

Have you changed your standing order payment to reflect our increased membership? If not you should have please do so now? This year like last will be a difficult year for the TSSS, we need everyone to pay their membership on time and ideally directly through the bank. Please help, we need your support. Membership 2012 is due on the 1st of June 2012 there will be an increase to £30 for annual standing order payments or £2.50/ £3 per month by standing order. Overseas membership will increase to £35 a year. As the administration costs of processing cheques is now higher, if you wish to continue to pay by cheque or postal order the cost will be £35 a year. It is a long time since we have increased the membership and you do get a lot of valuable information. Plus the opportunity to attend range of events every year. Remember you have control of a standing order not us. If you have any queries please do not hesitate to contact the TSSS office.

AspecTS We have made the difficult decision to reduce AspecTS the TSSS newsletter to three copies a year Spring (March) Summer (June/July) and Winter (Nov/Dec) conference reports will go on the TSSS website as and when they are ready and not in the newsletter. If you do not have access to the internet you can request a hard copy from the TSSS office. We hope you understand the need for this change it will save us almost £2000 per year which is a lot. Help the TSSS reduce costs and help the environment at the same time. Would you be happy to receive your newsletter by e-mail? If so please e-mail Arlene requesting to by added to the E-newsletter list.

Great Weather Lottery

Why not join the great weather lottery, That way you have a chance of winning too…… Good Luck www.theweatherlottery.com Rotary Why not contact your local Rotary or Lions club, and see if they would be able to help with fundraising.

50/50 Club

The Turner Syndrome Support Society relaunched the TSSS 50/50 Club as of January 2012 Everyone who is part of 50/50 should have had a letter from Jim asking them to rejoin and cancel their standing order and create a new one with new account details. The Club runs from January to December each year, at a cost of £1 per month. This will be a total of £12 for the 12 months, payable in advance. You can join at any time, just adjust your payment for the months left in the year. How does it work? 3 lucky numbers will be drawn each month by an independent selector. Prizes: 50% of the money per month automatically goes to TSSS The other 50% of the money is shared between 1st 50% less 2nd & 3rd prize, 2nd £12 and 3rd £6 This is the perfect way of raising money for the TSSS as well as being in with a chance of winning yourself � For an application form and a Standing Order form please contact the office/ Jim Cleaver

There is no limit to the amount of times you can win in one year, or how many numbers you are allowed, as all numbers are entered in to the draw each month. January Winners are as follows:

1st Place Number 29 Arlene Smyth

(Arlene has waived her prize)

2nd Place Number 14 Gerald Halon

3rd Place Number 36 Jane Smith

Mrs TSSS reports

Due to a family bereavement Susie will not be writing an update this issue but has asked that we thank the members and committee who sent some lovely cards to her and Steve. The amount of cards that they received from all their friends within the TSSS was very much appreciated

Young Adults Update

21s

Number 29 Arlene Smyth

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Number 14 Gerald Halon

3 Number 36 Jane Smith

Charlotte says: Hi Girls! Hope you are all having a good start to 2012. I started the year by going to Tenerife with some of my family in February. It was really nice to get away and have a proper break. It was lovely to escape from the typical cold weather we have here! Over the last few months, some of our girls have been very ill, and we are all so proud of how they have coped, and how their TS determination and great personalities has helped them to recover. We love you girls, and wish you well. So 2012, we have a very exciting year ahead! We are already planning the conference programme, and the family fun weekend, not to mention some 18th and 21st birthdays, and our first ever young adult wedding! I can feel its going to be a brilliant year � As always, me and my sister Emily are helping our mum with fundraising this year, and my mum is keen for the younger members to join in. One idea we had was for people to hold a sponsored event during awareness week in June. If you would like to take part, further information on fundraising ideas can be found on the fundraising pages or on the website. One last thing, the theme for the drama at conference this year is ‘Diva’s.’ As always, it would be nice for us to get involved, so if you have any song ideas, then please let us know. Hope you all have a wonderful 2012, see you soon! Love Charlotte xxx

Kylie says: Hi all I hope you are all well. We have a busy but exciting year ahead with Irish and Rugby open days, family fun weekend, 21st birthdays and even a wedding all before conference I can’t wait it is all so exciting. I am still working away as a nanny for two girls now 3 and 7 how time flies. I also now look after their little cousin Charlie every second week which is challenging at times but also a lot of fun. I am also

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close to completing my Queens Guide Award, I hope to have it all done by June and receive it in November it has been the both challenging and rewarding. My wee Charlie and I are in my wee flat and doing ok struggling to cope a little but we are working hard to make a success of it with the help of Mum, Dad, Carlene and Emily. I wish everyone sitting exams and studying good luck If any one has any ideas for sessions at conference or ideas for drama please let us know and we can take these forward on your behalf after all it is your society. Good luck Lots of love Kylie xxx

Teens Report Meg says: Hey girls. Hope you’re all well! I can’t believe we’re in 2012 already! Well, after a few setbacks, I’m finally getting back to ‘normality’ – whatever that is, and the pantomime I’m in, Alice in Wonderland, opens in March. I’ve finally learnt my lines, and I’m so excited about it! I’ve just finished my GCSE mocks, and now it’s all preparation for the real thing. Good luck to all of you taking exams, I’m sure you’ll do amazing. As most of you know, the theme for the show at conference this year is ‘Divas’, so if any of you have any ideas, let Ella or I know. One of the songs we are thinking of doing is ‘Proud’, by Heather Small. If you’d like to familiarize yourself with the song, check it out on youtube! Lots of love, Meg xxx

Ella says: Hi Girlies! Hope you are all well! Have any of you had January exams? I’ve had a couple so have been working pretty hard lately! For those of you that did, I am sure they went brilliantly. I am still having driving lessons and they’ve been going really well. In my last lesson, my instructor said to me I can go in for my test as soon as I have done my theory!! Was so pleased and have been looking at some cars already. Hope you all had a lovely Christmas! Seems like so long ago now though!! I went skiing in France with Jena and her family over new year. Had a fantastic time and we had so much snow! (There were plenty of snowball fights along the way!) By the way, if any of you start having ideas for conference please let me or Meg know so we can make the show this year the best yet (it is going to be hard I know!!) Lots of love Ella xxxx

My TS Life- Val and Kacey’s Story- Part 1

*editors note- this feature is a chance for anyone and everyone to write in and share their stories of life with TS. You don’t have to be a girl or woman with TS- parents, siblings, partners, families, friends, pets- anyone is welcome to write in about what TS means to

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them. This issue we have a heartfelt, candid and touching story from one of our Mum’s- Val: In 2005 we travelled 900 miles round trip to London for our first IVF treatment. We choose to donate my eggs. The amount of eggs I produce are shared equally with another couple. We completed our treatment and with great surprise was a success. August the 5th 2005, I was 20 weeks pregnant when my Husband David and I were married. The next 3 weeks I was admitted in and out of the Hospital, feeling so unwell, they found I had an infection. The doctor was unaware I had been sent home, with the wrong medication, so by the time she noticed I was extremely unwell. In the labour suite, my Husband was told that I had developed septicaemia and the only way they would be able to help me, would be for our baby to be delivered. Doctors had told him he would have to make the decision as they only had 45 minutes to save my life. Thankfully my husband didn’t have to make this decision as I went into labour and our daughter Kaitlyn was born on 28th August 2005 at 9.52pm weighting 1lbs 4oz and 17 weeks early. Sadly our precious daughter was taken by the angels on 6th September 2005 age 9 days. After Kaitlyn's first anniversary we decided to try the IVF once more. A number of people were in shock that we would put ourselves through this all over again, and others were happy as long as we were, only my heart was so sure that I had too. This time I decided to write a day to day diary, as I so wished I had done for Kaitlyn. There are 3 diary’s full of information so I have tried not to write a novel. Monday 20th November 2006. The clinic in London had the telephone call to let us know the other couple who would receive half of my eggs were ready to start. David had expressed that he would prefer my mum gave me my daily injections instead of him. Our oldest daughter Chloe aged 10 back then, was having a lesson with her horse. So our first injection was done in our freezing car watching Chloe in her lesson. My mum travelled to London with me every few days, then back to Dundee. I was struggling to produce my eggs this time, so the amount of injection was being put up at every visit. Sunday 3rd of December, my mum gave me the last injection. The following day David and I went into have my eggs removed. Once I woke up from the anaesthetic David told me that

they collected 6 eggs. Not as many as the last time, but enough to share with the other couple. The following day the clinic telephoned to say that all three of our eggs had fertilised. I cried so much on the telephone with a mixture of feelings, happy, relieved, scared and sad. Thursday 7th December we set off in the car for the 8 hour trip to London. The following morning we arrived at the clinic. One of our embryos didn’t progress very far. The other two had divided well; due to them both developed between 8 to 10 cells. The doctors decided to put both back inside as they didn’t want to choose between them. The next 4 days I had to rest in the hope that one of our embryos would continue to grow. December 18th, I had a positive pregnancy test. My mum and I cried, again with happiness and fear. I gave David a bag which contained dummies, a rattle and a pair of booty’s when he arrived home from work. There was again more tears. The happiness was short lived, as I started to bleed 2 days later. Due to only being 4 weeks pregnant, they were unable to see very much, so I had blood taken to check my hormones. Everything was fine after a few days of blood tests my hormones had more than doubled. My placenta from Kaitlyn had shown that my amoine system closes down when I’m pregnant. So I catch infections very easily, so it was decided that I would start a course of antibiotics from 12 weeks until I was 30 weeks. Plus have my blood checked every week to make sure I didn’t catch an infection. My mum came with me to my 12 weeks scan. The midwife had suggested we go down to the bigger scanning department, as my baby had something on her head. There I was lying on this bed with doctors and nurses all having a look at my ultrasound and nobody talking. My heart was racing; I could see the fear on my mum’s face. Then theses dreaded words came. “Ok Valerie please have a seat in here “well I’ve been in this room many times before as we had a number of miscarriages and eptopic pregnancy’s in the past. This is where they tell you there is no heart beat. Doctors arrived and explained that my baby had a bubble on her head and down her back called a cystichigroma. His explanation was that it’s more likely to be a girl and she may have either Downs Syndrome or Turner Syndrome. My first thought was thank goodness there is still a heartbeat. We left this appointment floating not

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knowing what was happening. We had to return back in a few days for a CVS test. We spent the next few days searching the computer, chatting to my Auntie in New Zealand who was a nurse. When we arrived back I told the doctor that I didn’t want the CVS test. Don’t want to talk too much about this part as reading the diary, I was asked a few times if I would like this test, even thou we said No. We were also told about the things we could do if we didn’t want to carry on with the pregnancy. By this time a number of issues with my care had gone wrong again. I was 15 weeks and the doctor had not given me the antibiotics, when they finally decided to write the prescription the dosage was far too high. My G� has always been fantastic with my health, plus he was the�only health professional that I had confidence in. When I spoke with my GP about my concerns we agreed that after what had happened with Kaitlyn it would be in my best interests to have another doctor. Within 2 days, my GP had everything organized, my weekly bloods, antibiotics, new doctor and another scan. We had good and bad news at this scan. Good news our baby was a girl and the bad, one side of her heart was bigger than the other side. As we waited on our scan photos, I looked around at all these happy couples laughing and smiling away. Thinking I don’t understand why after 7 years of trying, can we not have just one appointment that’s positive. My 20 weeks scan arrived, my CRP level in my blood had been up and down and I was still on my antibiotics. Our baby girl was measuring the right size, the cystihgroma was still there. The heart was working properly but was still bigger on one side. Plus her thigh bone was still growing the ultrasound doctor has suggested that it may be a sign of Down syndrome. 24 weeks scan; the cardiologist noticed a narrowing but explained that if it’s a problem it would only be a small problem. Other than that baby was growing fine. 26 weeks scan, Dr Ausginstin told us that there was no fluid behind our baby’s neck. He explained that the neck has been stretched due the fluid but again we would have to wait until she was born. I was then started on steroids in case I went into early labour.

28 weeks scan, Dr Augustine was pleased with her growth but found that the blood flow in the cord was not flowing properly. Scans will be weekly now, so they can keep a close check on my umbilical cord. 29 weeks scan; our baby had too much fluid around her body. They were unable to explain why this has happened. We have to be carefully in case my waters break. 30 weeks scan, after being left alone all week, the scan showed that the fluid had gone down quite a lot. 31 weeks scan, it was decided I should stay in hospital as they thought my waters were leaking and wanted to keep a 24 hour check on me. I was discharged the following day. Cardiologist had early on in my pregnancy thought it may be best for me to give birth through in Glasgow. So he would be at hand if he was needed. After having a look at the scan today and still undecided if our baby had a narrowing of her artery, he decided that I would be fine giving birth here at Ninewells. 32 weeks scan, no change, but feeling very breathless. Found out that Dr Augustine is going on holiday in 13th July 2007. Quite upset, as I have gained so much trust and confidence in him. That I don’t think I could have carried this baby without both my GP Dr Graham Watson and Dr Augustine’s help, care and professionalism. 33 week scan, the doctor found that the babies cord was getting worse. He is hoping to start me off next week 12th July. I was so relieved that he was going to be around to delivery our baby, as I have been so carefully monitored thanks to him. But I was so scared……..

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Wednesday July 11th 2007 was my 34 week scan. All night I was feeling uncomfortable, by 6am I decided to get up. By 7.45am I had contractions plus started to bleed. My husband took me straight to the hospital. On the way I telephoned them to let them know we were on our way. The midwife had told me to go back home and phone again if the contractions were getting worse. Only I remember Dr Augustine saying that due to my 2 early births ( Chloe 12 weeks early and Kaitlyn 17 weeks early), to come straight in. On arrival the midwife asked us to have a seat in the waiting room. Only Dr Augustine had seen us. He approached, and asked us to come with him into one of the delivery rooms. I was so happy to have seen him. At 9.30 am my waters broke, Dr Augustine took the gas and air away, as he wanted me to be more alert as I was enjoying the gas and air too much. Dr Augustine took my left hand while David took my right. At 9.58am weighing 4lbs 10 oz our precious Kacey was born, before taking Kacey to the special baby care unit. Dr Augustine insisted that the midwife come back and let us hold Kacey. I remember feeling so strange at this point. I wanted to hold Kacey so much, but the fear of losing her the same away as our Kaitlyn was so heart tearing. At 1pm we walked into the special baby care unit, there was that smell, the beeping noise. My body was refusing to go any further. As this was the first time after Kaitlyn had died that I was back here. In the intensive care unit there was a few of the nurses that had looked after Kaitlyn, thankfully Shona (nurse) appeared. Shona had looked after our Kaitlyn; she explained that Kacey was doing fine. I then found the strength to enter the room. Kacey was very puffy looking, but she had no tubes, lines or monitors attached to her, unlike Kaitlyn. At 9pm I was allowed to hold Kacey, I cried so much with happiness, excitement, fear and sadness that we were never able to hold Kaitlyn this way. I did notice that her breathing was funny and her lips were a shade blue. I asked the nurse if this was ok, and she explained it was nothing to worry about. 7am I was woken by one of the neonatal doctors. As soon as I looked up, I knew this was not good. This was the same doctor that was on duty when Kaitlyn died. I was told that Kacey had deterated very fast and had been resuscitated and was now on a ventilator. They were waiting to talk to the cardiologists in Glasgow.

As I approached the door to see Kacey, there were so many nurses and doctors around her incubator. I was asked to wait in the TV room and someone would come for me, when they were finished. David arrived at 8.45am, we were allowed in to see Kacey at 10am. Lying in the incubator with lines, tubes and a ventilator, this was not the baby I had seen last night. Kacey’s body was a mottled colour, doctors were standing in little groups talking and coming over to do their checks. I remember closing my eyes and thinking, this can’t happen to us for a second time. Doctors thought that when Kacey’s heart duct had closed, that was when she deteriorated. So they had given her prostin to open up her heart duct again. We were all sitting waiting on her transfer to Glasgow. Once we arrived at Yorkhill in Glasgow, we were told Kacey had deteriorated again, and they had to stop the ambulance to get Kacey stable again. For 4 days Kacey had repeat scans done on heart, the heart duct was still open so they were unable to see how well the heart was working. At birth your heart duct is open 1mm only Kacey’s was 6mm. Her heart rate was so fast, blood pressure to� high plus they had noticed due to the lines in her body, Kacey had an infection. Unfortunately with her body being so puffy, they were finding it extremely hard to put new lines into her arms and legs. With so many lines Kacey was unable to move her legs and arms. 6 days old. David was travelling back to Dundee to work then returning at night. My Parents were visiting with Chloe every few days. After my lunch I was asked by one of the doctors to have a chat. I really didn’t want to go as I knew this would be bad news and I was on my own. I was asked all about my pregnancy, and what I knew about her birth. The doctor explained they were unsure if it was Kacey’s heart duct or her lungs that had caused her to become very ill. Kacey also had cysts on her kidneys, and they had confirmed that 90% Kacey had Turner Syndrome. Kacey also had small bleeds in her head, which they believe happened when she was very ill the first time. 7 days old. I was allowed to hold Kacey; it was so good to finally hold her close. A part of me wanted to run out the hospital and take her home. *Editors note- in part 2 (in the next issue) we hear about Kacey’s early weeks and her journey to being allowed home.

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A Letter of Thanks

Dear Arlene & TSSS, This letter is to say a huge THANK YOU to Arlene and TSSS. Back in December 2009, my husband & I discovered that the baby I was carrying would be a girl with Turners Syndrome. I had undergone the CVS procedure at St. Georges in Tooting & almost 3 weeks to the day – by which time we thought the baby was OK and had just started to enjoy my pregnancy – we got the call to tell us. Of course, we had never even heard of Turners Syndrome but we were asked to come up to see Richard Scott, a consultant in clinical genetics, straight away. The shock was huge and horrible and initially what we read on the internet about the condition was both negative and terrifying. Luckily Dr. Scott was both honest and optimistic and gave us the contact details of the TSSS. Eventually, after several days in shock trying to decide whether to continue with the pregnancy and alot of researching in the internet (including the informative & positive TSS website), I contacted Arlene. My husband had already decided in his mind that we should carry on & have the baby, but I was still very frightened. We shed many tears and did not share the diagnosis with anyone initially. In our hearts, we knew almost immediately that we wanted to carry on, but it took a huge effort to come to terms with the potential challenges that lay ahead both for our child and ourselves. The call to Arlene was the turning point for me. Having a Turner’s daughter herself, Arlene was well placed to comfort me and offer realistic but positive advice. After a long phone call, talking through all my fears with Arlene, I was able to make the decision to continue with my pregnancy. The next 5 months were difficult with the fear of what lay ahead, but I was lucky to have an easy pregnancy physically until right near the end. My labour was hell, I’m sure made worse by my terror of how ill our baby might be once born and it took me

several weeks to settle down and accept the demands of motherhood.

But it was all so worth it as we are now the extremely happy parents of a truly gorgeous little girl whom we have named Abigail. Her heart was checked when she was two days old and found to be normal, and to date, she has had no complications. She initially had the cutest little puffy hands & feet, but that was pretty much it physically to indicate her condition, so we are extremely lucky. Now 15 months old, she is a real delight in our lives and our extended families, we can’t wait to see her smiling face in the morning and of course after each exhausting day (because it’s hard work as any parent knows), to get her back into bed at night!

So, Arlene and TSSS, many thanks for your words of advice at the crucial moment and all the information you subsequently sent on. Yours sincerely, Caroline Cooper

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FUNDRAISING Olympic 3 Tenner’s Appeal Launched in 2009 the original 3 Tenner’s appeal was to raise awareness, improve diagnosis and raise £10,000 which thanks to your superb support we achieved in what was the 10th anniversary of the TSSS Here we are now in Olympic 2012, the society has its own hurdles to jump, marathons to tackle, and balancing acts to perform, and we need your help please to keep raising those vital funds, so that we can continue to support members, raise awareness� improve diagnosis, and generate interest in research projects. It still remains, that an estimated 75% of girls and women with TS in the remain undiagnosed. Throughout the UK that equates to in excess of 10,000 girls and women not receiving the support and medical management they need. We thank you for supporting our Olympic 3 Tenner’s Appeal

Something for Everyone

The beauty of fundraising is that you choose what suits you best, at a time that suits you, it is as easy as you wish to make it. Whatever you can do to help is greatly appreciated and we thank you so much. Please let us have your stories and photos. Fundraising packs are available from the office, and there are some ideas below for inspiration.

Waitrose Supermarkets: Community Matters, please nominate the TSSS.�Quick and easy to do pick up form in your local store it’s a 5 minute form. Need to make it local to you. Ask Jane for help if you need it please. Jane Raper applied to the Leeds City Store, and the society received £125

Purple Power Day: Why not ask colleagues or your school if you can have a “ Purple Power Day” and ask everyone to wear something purple,�to raise awareness, and ask for donations of 50p or a £1 . Ask for literature you can display,

Push the Button : So we all know that laptops and smartphones have taken over the world ! This awareness day June 21st, let�s use that to our advantage, please let your fingers do the talking and use Facebook, Twitter,�BBM and your Email Signature to get the message out there� All you have to do is ask them to Text TSSS11 £5 to 70070, which will raise £5 for the society and add £5 to their mobile bill. Should they wish to donate more, then just change the amount.

Awareness Week – 3 Tenners Sponsor Day TS awareness week, 16th-24th June, ( if you’re like me , and forget dates, try to think of it as the week of mid summers day, it helps me ) An ideal opportunity to raise funds through sponsored events, bake sales, fun days, raffles, auctions etc. Whatever you can do, ask the office for a fundraising pack, its very rewarding, and great fun too.

Smile Day A fun idea is to create our smiley face logo on the floor at school or at the office using masking tape, and then ask people to donate their loose change. We did this at work recently for Children in need with an 11 foot Pudsey bear on the floor, caused lots of interest, and we did well. It just makes a change from a collecting pot !

Shop till you drop : Raise funds for the TSSS without leaving your keyboard !. Its true...if you or your family and friends shop online, then please go via www.easyfundraising.org.uk register, select the TSSS as chosen charity and we earn commission off your purchases. Doesn’t cost you any more money, all the usual stores are on there, but we earn a % from the stores. Simples ! 50/50 Club If you , or your friends and family would like to be “ Friends of the TSSS” and join our 50/50 club, then please just ask for a form by phone or email from the office. Costing just £12 a year, it raises funds, but gives you a chance to win too !. What a result !..

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Look after the pennies: Don’t forget you can use Just Giving and Virgin Money to pay in your Fundraising amounts, as it is quick and easy to do www.justgiving.com/turnersyndrome www.virginmoney.com – search for Turner Syndrome Support Society you can also set up your own page, for your sponsor events on here.

Run for the FSI! The FSI Challenge - 30th June 2012 – more details to follow Thornbridge Outdoor Centre and the Peak District National Park play host to hundreds of small charity supporters willing to take part in rain or shine to raise funds for their causes. The FSI Challenge can be walked or run on a 4km or 10km course so is suitable for all ages and abilities. The event comes complete with a dressing up box to make sure there is a fun filled purple procession through the Derbyshire hills! Get in touch with louise@thefsi.org www.thefsi.org/get-in-touch Hayley is doing the challenge and has set up a justgiving page, www.justgiving.com/hayley-cleaver0 and would welcome donations. She is happy to act as a contact should anyone else wish to take part.

Roll Up, Roll up Preparations are already under way for conference 2012, no sooner have we packed everything away, then we are getting ready for the next one. Those who have attended conference know that we have a silent auction where you can write your bid for an item, and then someone else goes along, (usually when you are not looking) and bids a bit higher, and so on. It can get quite competitive !

Auction :We are currently trying to source items for our auction. Previously we have had a super holiday let, bracelets, hampers, signed books, cookery sets, crystal, cuddly toys, home cinema systems, cameras, all sorts of things. All donated by very kind individuals and companies. If you have any contacts, or work in the retail sector please do ask if they can donate anything suitable for either the auction or raffle.

GOLD MEDALISTS – THANK YOU

We would like to thank each and everyone of you for all your fantastic fundraising and donations, a selection appearing below. Wishing you every success with your fundraising in 2012. Let me know how you are getting on, fundraising packs are available and if you need some help just let me know. Good Luck Together we can make a difference. Love to all Jane Raper x

Donations List November The Freemasons Grand Charity has donated £250 to the Society. Mr Eddie Hawthorn from the Dromara and District Sheep Dog Society presented a cheque for £2188 for the Society to one of our members Andrea Burrows. We received a £100 donation from Take a Break magazine after two of our members, Kacey and Val Reid did an article for them featuring Kacey and her horse Sammy.

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Fairfield Preparatory School donated to £254.31 to the Society. We were put forward to receive a donation by one of our lovely mums Vikki Shepherd. The Seed family have donated £295 to the Society in lieu of gifts at Pamela’s Seed 50th Birthday party. Zoe & Paul Baines have donated £430 to date to the Society. Which they raised by Paul running in the Leicester Half Marathon in September.

December Selwyn College donated £330 to the Society. We were put forward by one of our members Dr Moultrie. Our secret Santa page on just giving has raised £270 to date. So thank you to everyone that donated. The carers of one of our members Nina Soiza have donated £50 to the Society. One of our lovely families, The Seed Family held a charity dinner in November in aid of TSSS and they managed to raise the grand total of £1940 in total. The Morrison Family held a Christmas fundraiser in December and they have raised about £900 to date so far. The Hutton family donated £50 to the Society. A friend of our chairperson of the society donated £100 to the society in lieu of giving Christmas presents. Lynne Morris donated £50 to the Society in lieu of sending out Christmas cards this year. Rebecca Varley Dance School raised £520 for the Society at their annual dance show this year. The Grossmoor School donated £40.50 to the Society. January A catering company, PJ Taste in Sheffield held a collection day in aid of TSSS and the have donated £20 to the Society.

Cardiff University Student Union has donated £275.25 to the Society. They raised the money by having a fundraising event during their recent RAG week.

TSSS Christmas Party Our thanks to the Morrison Family for hosting a wonderful Christmas party on the 10th of December. It was hosted at The Consett Golf Club, Co Durham, we were all given a warm welcome and super buffet. The brilliant State Express played for us all night. Our thanks to everyone who kindly donated a prize for the evening. Christine along with help from friends and families had a host of fundraising goodies for people to take part in. Everyone had an absolutely wonderful time and raised over £800. The TSSS thank everyone who helped make the evening a success and very much appreciate the continued support of the Morrison Family. The below photo will give you a flavour of the night.

TSSS Family Fun Weekend

The TSSS are hosting a relaxing fun weekend for members from the 18th-20th of May 2012 at Park Hall Hotel, Park Hall Road, Charnock Richard, Chorley, Lancashire, PR7 5LP. This year we are not restricting the weekend to mothers and daughters, everyone is welcome, friends, dads, brothers, grannies of all ages are welcome to join us.

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You can join us for the whole weekend or you can stay for the Friday or Saturday night only, whatever suits your needs and budget. There is no formal programme instead there is the option to spend the day at Camelot Theme Park, discount tickets are available from the hotel reception priced at £10.99 (normal price is £24) It is a great theme park for all ages with something for everyone. Have a look at their website www.camelotthemepark.co.uk You can relax in the hotel pool, go to the gym or book yourself a treatment at Cleopatra’s www.cleopatraseccleston.co.uk you pre book by speaking to the therapists Tel 01257- 455045 as treatments are very popular. They are open Friday 10am to 7pm and Saturday 10am to 5 pm. All TSSS members will receive a 10% discount so, remember to tell them you are from the TSSS.

Or you can get the train into Manchester from Chorley station which is a short taxi journey from the hotel. There is a local bus from the hotel to the station, check with the hotel for times. You could do some shopping or visit a museum, the choice is yours.

On the Saturday evening we will have an American themed meal in Sam’s Diner followed by a disco/karaoke in The Eccleston Suite so that we can dance the night away. On Sunday morning after breakfast we will have the chance to get together in the Eccleston Suite for a chat and an opportunity to say our goodbyes. Those of you who want to have lunch before you travel, can book with reception.

The best thing about the TSSS is our members who are warm, caring and friendly people who so enjoy being together. It is a chance for the girls to giggle and have fun. For the mums to

have a good old natter and for the ladies to swap stories, the dads can enjoy a pint. All this and the chance to have some fun too. You can call or e-mail Arlene if you have any questions

Booking could not be simpler call Park Hall Hotel on Tel 01257 455000 and ask to book a room from the TSSS allocation. Quoting the TSSS will ensure you get the discounted price. The hotel will require a £30 non-refundable deposit per adult to secure your booking. The balance is payable on arrival. As always it is advisable to take out travel insurance to ensure you are covered for any unforeseen events. The TSSS accept no responsibility for your booking. You can call or e-mail Arlene if you have any questions Arlene will be at Park Hall from 1pm on the Friday to welcome members as and when they arrive.

Special Rates for TSSS: Friday 18th May, based on 2 adults sharing @ £29.95 per adult, bed and full English breakfast 1 adult @ £49.95 bed and full English breakfast Children sharing with parents @ £5.00 per child, including breakfast Saturday 19th May, based on 2 adults sharing @ £49.95 per adult, dinner, bed and full English breakfast 1 adult @ £69.95 dinner, bed and full English breakfast Children sharing with parents @ £15.00 per child, including dinner and breakfast Entry to Camelot Theme Park @ £10.95 per person (normally £24.00) Free use of the leisure facilities. Therefore the cost for the weekend would be: 2 adults & 2 children @ £199.80 for the 2 nights

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2 adults & 1 child @ £179.80 for the 2 nights 1 adult & 2 children @ £159.90 for the 2 nights 2 adults @£159.80 for the 2 nights 1 adult @119.90 for the 2 nights 1 adults & 1 child @ £139.90 for the 2 nights Directions to the hotel by car from the M6 at jcn 27 or 28 & M61 at jcn 8 Motorway then follow the brown tourist signs to Park Hall/Camelot it is easy to find. Bear in mind that often the Sat Nav takes you off the motorway early and through the small villages. The hotel is just above Charnock Richard Service Station. The directions from the hotel website seemed most concise. Website www.parkhall-hotel.co.uk there is ample car parking at the hotel.

Directions to the hotel by train are that the nearest train station is Chorley which is 4 miles away and a taxi from the train station is approx £7, TAXI COMPANY – COOPERS - 01257 261666. The Taxi Rank is situated opposite the train station at the bus station. There is a local bus from the station that runs one an hour. Preston is 10 Miles away and a taxi from Preston will cost approx £15 or £20 depending on traffic. Please call or e-mail Arlene to let us know you are coming. If you have any questions I will be happy to help my mobile no is 07947 554587 if you need to contact me.

Photos of some of our girls and young adults

Aimee & Emma

Kylie, Helen and Jess

Get well wishes Our love and best wishes to Meg Cubitt who has been through so much lately and had a really hard time before Christmas. We hope 2012 is a healthier year for you. Take care and keep on smiling. Our love and best wishes to Helen Morrison who gave us all a fright when she became very ill following a blood transfusion. As with everything Helen keeps on smiling. We hope you will be soon feeling much better.

Wedding Wishes Best wishes to Leanne Durkin & Ryan who will be getting married on the 5th of May 2012. We hope you have a wonderful day and wish you every happiness for the future.

21St birthday Congratulations Congratulations to Melissa Wall who turned 21 in February & Ellie Hatcher who turns 21 in March have a wonderful time girls you deserve it. I remember when you were only young girls and look at you now, fantastic young women.

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Scottish Group

The Scottish group will meet again on 31st of March 2012 from 2-4pm at the TSSS office. Contact Arlene on 07947 554587 or Turner.Syndrome@tss.org.uk if you are able to attend. Following the lovely day we had in Perth just before Christmas, we can plan a summer get together in Perth, Dundee or Edinburgh as most of the members at the moment are from the East Coast. The photo above was taken in Perth. All ideas and suggestions welcome.

Trustee announcement At our recent TSSS planning meeting Les Walker resigned from being a trustee due to personal commitments. Our thanks to Les who has served as a trustee of the TSSS for over 10 years. We very much appreciate all that he did to help and support the TS over the years. I am delighted to say that he is happy to continue to support the TSSS via an East Yorkshire local friendship group that he hopes to get started this year. He and Lisa continue to be a contact for couples. We wish the Walker family all the best in the future. A formal thank you will be made to Les when possible. That means that there is a current vacancy for a TSSS trustee. We are currently producing a Trustee Handbook which should be available shortly. If anyone wishes to express an interest in becoming a committee member or trustee of the TSSS please contact Arlene at the TSSS office.

Claire’s Story

My name is Claire Knight and I am 28 years old and was diagnosed with Turners at birth. I live with mum, dad and my brother Matthew, who is 21. The years have been hard. I had heart surgery at five weeks old and many more problems associated with T.S and not associated with TS. Much of my early life was in hospital and schooling was hard. I missed a lot of school and was falling behind in my learning. I was not always in good health so I went to Woodlands Special School. I moved there when I was eight and left when I was sixteen. Then I moved on and had a hard time at college on a mainstream course as I had the capabilities to achieve. Unfortunately I had my hair burnt and I was finding it hard to recognise who was a good and trusting friend. I found myself in some very difficult and dangerous situations which caused me distress and I left after the first year. I persevered to find a course and I went on to do skills development and then went on to gain my N.V.Q level two in Child Care. I enjoyed the course work and my work placement was at the pre-school my mum worked at. I found it stressful in the work place and the responsibility overwhelming so I was unable to manage this type of work in a busy and challenging environment. My ability to relate and support a child one to one was recognised and praised, the hard work and commitment proved I was reliable and a valued member of the team but was unable to fulfil the pace and varied work in such a bustly place. The pace of life in this environment makes my head whizz!!!!! I felt it was for nothing and I had wasted my time. During my late teens I was desperate to have a Saturday job. I had no success in my many applications, so contacted the voluntary services at the hospital and became a volunteer in the hospital play room. Many of the ward and playroom staff knew me from my numerous visits to the ward and that my dad worked on the ward next to it and sometimes on the ward I was on. I did this from the age of 16 until 23 and my dealings with the children were improved because of my training, but I still find this difficult to recognise. I found it hard to keep work and I feel a ‘failure’ but mum and family support is brilliant. I did work in Admin but both the businesses went bust. I had

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support from workable plus to access these jobs but I don’t have this at the moment as my name is on a waiting list. My social activities are with the Learning Disability team as I have been recognised as being a vulnerable adult etc. I also go to church and this a great support and I feel safe there. I see loads of Drs for this and that, I could start my own ‘Soap show’ I have been on HRT for some years thankfully due to this my bone density is above average for T.S adult. As a child I did not develop as I would of hoped and so I have had a boob job on the N.H.S. I am pleased with the look I have passed the ‘gel pads ‘ to my mum!!! Life has brought me, my family and family friends many challenges and tears but somehow we have just got on and coped with it. I am very close to my Grandma and Grandad they are always there to help me. I entered them for Grandparents of the Year and we reached the finals. The next part of my story has been my biggest challenge to date. I have not included all the details but my vulnerability lead to me being abused. I tried living on my own four years ago, in ‘supported living apartments’ and really lost my way. My desire to have friends and be in a relationship was so strong I could not manage my emotions and would/could not accept the potential dangers. Emotionally, mentally and physically I suffered. It was being assaulted that made me feel so dirty and wronged that I took myself to the nearest police station and thankfully my parents joined me and I returned home, again!!! I found out living in an environment with other adults with L.D and who were so streetwise was not for me. This was when my vulnerability came to light as I found it stressful, tiring and continued to have difficulty making friendships and decisions and recognising whether I was at risk of being harmed. Most of the time it was hard to cope with looking after a home, cooking, working and managing money continued to over whelm me. My parents and immediate family story is painful and I have found it hard to learn that the experience has affected them greatly too. 3 years on I am beginning to get my life back together with the help of family, friends psychological and CBT help and Social Services (when the money is available, but that is another story!!!!)

We are now in 2012 and this year my parents and I are looking at independent living again. Please listen to my story and learn from our experiences. It is a nerve racking and exciting thought and with the right support and the decision to listen to the advice of long standing family and friends and support services I know I have the personal resources to achieve this. I am gradually accepting my limitations and embracing my strengths and using my determined will to seek a more stress free and healthy lifestyle.

Helen’s Story

Hello my name is Helen Morrison, from County Durham, and most of you may know me because I haven’t missed a Turner Syndrome conference yet and I’m the one that starts the crying off when we all say bye (always).

I’m 21 years old and I was diagnosed with Turner Syndrome at 11 years old. I was 4 ft 2 inch before I started my growth hormone and now I’m 5 ft 1 inch and as my target was to reach 5 ft I’m very happy!!

Unfortunately, I was also diagnosed with epilepsy when I was about 16. Ever since then I have had a battle with all the different medications I had to take. In the summer of 2011 things weren’t great and my seizures seemed to be getting worse for no apparent reason. My Mum started keeping a diary and she and Arlene sat down to think of the reason why I could go a fortnight without a seizure then BANG I would suffer terribly! Arlene (my heroine) came up with the conclusion that every time I took the progesterone part of my HRT it would trigger seizures (or funny turns as the Morrison family call

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them).

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So the next thing to do was to try and persuade the doctors to let me have a break from progesterone for a while just to prove that there was a link to seizure activity. My consultant agreed to a 3 month break as long as after 3 months I would take some progesterone in order to induce a bleed. As we thought, I had an almost seizure free time! BINGO! Problem solved….so we thought!

So, between October and December last year I only took oestrogen knowing that in the New Year when I would introduce progesterone my seizures would almost surely come back!

Within a couple of weeks of my hospital appointment I started bleeding but was always led to believe that it would soon stop……..but it didn’t week after week….month after month... Eventually I couldn’t even walk Maggie (our dog) for 10 minutes without feeling like I had run a marathon (which I would never do.... maybe in my dreams!!... and that would be a nightmare still!!) I started having headaches and I felt heart palpitations so the next day I was sent to the docs to have my blood taken. They rang up to tell me my bloods were really low and I was admitted into hospital as an emergency because I was really anemic and needed to have a blood transfusion as soon as possible. I ended up needing 4 units and there my week long stay in hospital commenced!

After 3 units I started feeling much better but almost at the end of the 4th I had a massive reaction to the transfusion and ended up being treated by the Crash team and ITU. I had started shivering, was sick and had a really tight chest as my lungs had started filling up with fluid. It was like a real life episode of Casualty!! My new best friend was an oxygen mask which I had to wear for the next 4 days until the fluid reduced and I was then able to breathe normally.

So… after a week of drama I was allowed home only to be readmitted a week later to have 2 biopsies make sure that the thick lining of my uterus was nothing sinister…..which it wasn’t I’m relieved to say!!

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I’m happy to say that I’m well on the road to full recovery and once all my hormones are reintroduced (by various different methods) I shall be as good as new and will be fighting fit for Leanne’s hen party and wedding. Not forgetting Ellie’s 21st!!

It was quite a start to 2012. One I shall never ever forget! But I will always remember my time in hospital and the get well wishes all my TS friends sent me, they really kept me going. Thank you all. I don’t know how I would have coped without my iphone, facebook and my friends.

Now I look forward to getting my life back on track…….if I don’t see you all before I’ll see you at conference in October.

Helen xxx

Oxandrolone Update

"We have shown in our UK study, published in the British Medical Journal, the efficacy of oxandrolone with a remarkable safety record. The only problem we have in prescribing it is its availability and its cost."

Dr Malcolm Donaldson, Senior Lecturer in Child Health

Well Done Melissa

From Cheryl Hollinshead

Mellissa aged 15 ready to take her last ever Growth Hormone injection. 11 years almost to the day of

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daily injections. She has been so good about taking her injections, she started doing them herself age 9-10. She takes all medications without complaining. Well done my darling you make us all so proud xx

Participants wanted for research project looking at foot and ankle problems in girls with Turner syndrome Title of Research: Evaluating Foot and Ankle Problems in Girls with Turner Syndrome We would like to invite you and your daughter to participate in a research project being undertaken by Stewart Morrison, a lecturer from the School of Health, Sport and Bioscience at the University of East London. What is the study looking at?

This study is being conducted to look at the assessment of foot and ankle problems in girls with Turner syndrome. A new questionnaire has been developed which looks at foot and ankle problems and this may be useful in the assessment of girls with Turner syndrome. As this is a new questionnaire we need to consider how good it is and how easy it is to complete before it can be used in clinics. Who is organising the study? This study is being organised by Stewart Morrison from the University of East London. Stewart is a podiatrist and has experience of treating foot problems in girls with the syndrome. Prior to starting this project it was approved by the Research Ethics Committee at the University of East London. What will this involve? If you are interested in participating, Stewart will ask you and your daughter to complete a questionnaire. This is comprised of 15 questions and these are answered by ticking a box. The

questionnaire will be provided by Stewart and once completed, can be posted back to Stewart. You will be given a stamped, addressed envelope to ensure that you don’t incur any costs and participation in this will take no longer than 20 minutes. Prior to completing the questionnaire we will also ask you to complete a short questionnaire specific to your daughter’s Turner syndrome. This will allow us to look for trends and to identify specific issues which may be affecting foot and ankle problems. How can we be involved?

Please take some time to think about the study. We are looking for girls aged 6 – 15 years of age with Turner syndrome and their parents/guardian. If you decide that you would like to participate and have discussed it with your daughter, then please contact Stewart Morrison, his details are below. Please email or telephone Stewart Morrison and he will send out the relevant forms to you. In addition to completing the questionnaires we will ask you to complete and sign a consent form. Email: s.c.morrison@uel.ac.uk Telephone: 0208 223 2679 What will happen to my information? Information collected on the forms will be stored securely on a computer held by Stewart. Only Stewart will have access to review these research records, and all data will be anonymised. No personal information will be given to anyone. You are not obliged to take part in this study, and are free to withdraw at any time. Should you choose to withdraw from the programme you may do so without disadvantage to yourself and without any obligation to give a reason. If you have any questions or would like to discuss this further please contact Stewart, details as above.

FSI Challenge

This year the Challenge is being held on Saturday, 30th June and will be followed on the Sunday again by the Thornbridge Hall Garden Party. We will therefore host the 'glamping' field again so please encourage as many people as you can to come and make a weekend of it!

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More information will be available on our website when we have it. Hayley is happy to act as a contact & answer queries for anyone interested in taking part.

Central England Friendship Group Update

The group had a great year last year. We held a Family Fun Day in July, an end of Summer Picnic in September and our Christmas Party in December. We had a great turnout at each event seeing many new faces. The children loved the Christmas Party especially the surprise visit from Santa. Special thanks go to Ann and Stuart Atkins and Ann and Pete Sutton as without their help these events would struggle to be as successful as they are.

Plans are now under way for this year. Information Day – Sunday 15th July 2012 1 pm – 5 pm End of Summer Picnic – Sunday 9th September 2012 2 pm – 4.30 pm

Christmas Party – Sunday 2nd December 2012 2 pm – 4.30 pm

All the above will be held at St Peters Hall, Holly Lane, Balsall Common, West Midlands and further information will be posted on the TSSS website or you can call Jackie O’Keeffe on 07977 486898 for further information. We will also be having stalls at various local events to raise money for our local group and the TSSS and to raise awareness of Turner Syndrome. If you can help and support us at any of the events then please contact me. Wishing everyone a very happy 2012. Jackie O’Keeffe Trustee (Mum of an 11 year old daughter with TS)

TSSS Goodies A full list of the fantastic TSSS goodies available from the Society can be obtained from TSSS office.

TSSS Publications A full list of all publications available from the Society is available from TSSS Office.

0300 Contact Number The members’ telephone contact number for the

TSSS is 0300 111 7520 Use it! It is cheaper!

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TURNER SYNDROME SUPPORT SOCIETY TRUSTEES/COMMITTEE MEMBERS

Please contact any of them if you have any queries or points you would like to raise on TS or TSSS issues

TRUSTEES Chair: Hayley Cleaver, Tel 01982 553480, email hayley@tsssuk.org.uk Vice Chair/Treasurer: Susan Wall, Tel 01993 845359, email Susie@tsssuk.org.uk Webmaster: Stephen Wall, Tel 01993 845359, email Stephen@tsssuk.org.uk Jackie O’Keefe, Tel 01676 535148/ 07977 486898, email Jackie@tsssuk.org.uk Kerry Bruerton, Tel 01902-743585 email kerry@tsssuk.org.uk Simon Holden, Tel 01777 870351 email simon@tsssuk.org.uk

TSSS Office: - Arlene Smyth, Executive Officer, TSSS, 13 Simpson Court, 11 South Avenue, Clydebank Business Park, Clydebank, G81 2NR email Arlene@tsssuk.org.uk

Tel 0141-952-8006 Fax 0141-952-8025 e-mail Turner.Syndrome@tss.org.uk =====================================================================================

Thank you to all contributors to Vol 5: Issue 1 of ASPECTS the Newsletter of the Turner Syndrome Support Society. Printed by Harlow Printing Ltd www.harlowprinting.co.uk

Contributions can be mailed to the TSSS office for the attention of the new ASPECTS Editor Joy Taylor, emailed to joy@tsssuk.org.uk or emailed via the TSSS office.

Deadline for next issue is 1st May 2012 Disclaimer

Not all the views and opinions expressed in the newsletter are necessarily those of the Turner Syndrome Support Society [TSSS]. If you would like clarification on any issue please contact Arlene Smyth at the TSSS office. �ASPECTS No part of this newsletter may be reproduced without the express prior written consent of the Governing Committee of TSSS. ASPECTS is free to TSSS members otherwise is £25 per year for three issues.

If you require this newsletter in different formats please contact the TSSS office.