ASPECTS

December 1999

Contents
Open Letter - The Menopause, HRT & You
Feedback on Sex and Sexuality - TS workshop
Medical Passport

Open letter to TSSS members

Dear Friends

The Menopause, HRT and You (Penguin)

"Try looking up Turner's?" I said to a young woman flicking through my book at the Convention. I will never forget her look of surprised delight as she spotted TS in the Index. Yes, it was there! I had another special moment when someone wanted to buy a copy for her Mum so that "we can talk". I realised that perhaps this was one health book that Mums and daughters with TS can share.

It was a pleasure to meet so many of you at the Convention and to talk about how The Menopause, HRT and You came into being after two years' collaboration with the TS Society and others. The book was published on August 26 1999 and, as you will have guessed, it is not a typical menopause book. The first hint is on the front cover which says 'for women of all ages'. The back cover mentions that the book explains 'why some women lack hormones or have an early menopause'. Although the blurb does not name TS, I persuaded Penguin to use wording to alert women with TS (and others) to the fact that the book is also for them.

Inside, Chapter 6 explains how TS and related conditions come about and then discusses your HRT issues. The medical discussion is complemented by three stories from members, aged 19 - 53. I am very grateful to Bungy, Joanne, Jennifer and others who shared their experiences. I also appreciate the time which two TSSS committee members spent reading the first draft. Extra thanks go to Dr. Gerard Conway for his feedback and supportive Foreword.

It is frightening to think that I knew nothing about TS two years ago. I have learnt a lot, thanks to you all. I hope the book will change such ignorance. By the end of October '99, it had sold 2918 copies in the UK. October also saw publication in Australia, New Zealand and South Africa. Copies are available from the TSSS Cheques should be made payable to the Scottish TS Society for £9 to include p&p within the UK [outside the UK contact the TSSS for more details on how to obtain a copy]. Penguin will make a donation to the Society for every copy sold this way.

Much to my relief, publication took place without any adverse publicity about TS. The other good news is that Penguin provided discount copies at the Convention that helped the TS Society raise funds.

Finally, I am delighted by everyone's ideas for using the book to get your message across. These range from getting the local library to order one to buying your GP a copy for Christmas! Some people have lent copies to family or friends to help them understand more about TS. But be warned: the book seems to be compulsive reading and numerous people have told me that their lent copies get lent – and lent. Someone else said she made the mistake of starting to read it in the bath and got very cold! Another woman began at bed-time and next thing she knew it was morning…

My thanks again – and happy reading! Caroline Hawkridge

P.S. For those who don't know, my professional background is health education. My interest in HRT began after my early menopause, aged 36. During my search for relevant information, I realised that a surprising number of younger women need HRT, including women with TS.

FEEDBACK on Sex, Sexuality & TS workshop

held at the Convention by Robina

I am delighted to have been asked to write up the workshop in this inaugural newsletter. There has been some resistance in the past to bringing this subject into the open. The workshop was innovative in this respect. I organised it in conjunction with Carrie, Susie, and our excellent speaker, senior family planning nurse Catharine (also my much beloved cousin!).

Whilst acknowledging that female sexuality is a politically fraught and sensitive issue -particularly for parents- I really feel that such delicacy is grossly inappropriate in the face of an all-too-literally crying need for information and the sharing of experience among women. But my prime motivation in organising the workshop, as I wrote to Arlene, was a conviction that a working knowledge of sexual health is potentially and actually life-saving and that the often rarefied, protective atmosphere in which TS girls may grow up, combined with certain difficulties in interpreting the behaviour of others and with self-esteem in general may render them particularly vulnerable within their sexual relationships; further, that an often negative body image may predispose to disordered eating and self-harm.

So popular was the subject matter of the workshop and so great were the difficulties involved in catering to an age range of 13.5 years to 40 years and above, that it was decided to hold one session for teenagers and another for adult women.

It was notable that the teens (as is surely their remit!) were lively, humorous and eager to absorb information. By contrast, the atmosphere in the adult session was more muted, many women expressing (some for the fist time) their pain with regard to past experience relating to their TS. However, there was laughter and irony too and a sense of cohesion. In both sessions, a need for clear information on physiology and pharmacology was manifest.

Feedback, at the request of parents, was difficult, since the sessions were held in strictest confidence. Many mothers (few fathers were present) expressed deep concern with regard to their daughters' sexual development, expressing grave doubts about their ability to form fulfilling sexual partnerships and much pain with regard to their lack of fertility. I felt compelled to point out that mothers and daughters may have very different agendas and perceptions on such subjects as long-term partnerships and progeny and that it is important for each to deal with her own issues independently and respect the position of the other. I also opined that issues relating to sexuality are not normally a major focus of the parent/child relation and that parents and daughters should not feel stigmatised in enlisting professional help where appropriate.

So, as a whole, I have to report that successful foundations were laid for much future work. Keep talking, keep smiling, be informed, be analytical and know that you have as much right to good 'reproductive' health and good sex as any other woman seem to be the take home messages at this exciting and challenging time.

[Thank you Robina for taking up the challenge & broaching this delicate subject it has opened up the debate. TSSS Committee]

Medical passport

Members might like to know that Norwich Union Healthcare has launched a medical passport, for patients to keep a personal record of their medical details. The pocket sized passport includes sections on family medical history, vaccinations, allergies, operations and medications. The passport has the backing of the Patients Association and free copies are available on 0800 122846.[UK only]