This information is available in leaflet form. Please send a Stamped Addressed Envelope to: Jenny Child,

21 Malvern Drive, Walmley, Sutton Coldfield, B76 1PZ.

Adult TS leaflet on employment

What is Turner Syndrome?

Turner Syndrome (TS) is a relatively common chromosomal disorder affecting only females. It exists where all or part of the X chromosome is either missing damaged in  some cells of the body. The condition affects around one in two thousand live female births. In Britain, there are thought to be some 10,000 girls and women who have TS, and the estimated global figure is 1.5 million.

Common signs and symptoms of Turner Syndrome

·         Short stature

·         Thyroid problems

·         High blood pressure

·         Hearing difficulties

·         Infertility

·         Heart problems

·         Difficulties with vision (myopia and astigmatism)

·         A tendency in some women to be overweight or obese

How Turner Syndrome affects life at work

Most women with Turner Syndrome are able to work, and, with the right support, thoroughly enjoy their working lives and make a significant contribution in the workplace. There is a heavy bias towards the caring professions, with many working as nannies, midwives etc. However, we are also secretaries, librarians, speech therapists, scientists and public relations officers. Colleagues and bosses may work alongside a TS woman for months or even years without ever realising that she is in any way different. But there are things it may be helpful for an employer to know about and watch out for, and that is why we have written this leaflet. Examples of some of the main ways in which TS can affect life at work are outlined below. None of these means that women with TS cannot do a wide range of jobs extremely well.

·         Hearing Impairment

Many women with Turner Syndrome have hearing difficulties. It is important to be sure that colleagues know of any difficulties, so they can speak clearly and repeat things where necessary. Also, any equipment such as a specially adapted phone must be put into place. (It’s also the law.) Equally, the TS employee must take individual responsibility for making sure she wears her hearing aid, if appropriate, and tell colleagues how to make life easier for her. It is best for both sides if she can be as open as possible about the difficulties to her boss and colleagues. (The Royal National Institute for the Deaf, the RNID, can help with issues specifically related to hearing issues. Their web site is www.rnid.org.uk)

·         Anxiety

Women with TS have a tendency to be over-anxious, and to dwell on things, to take the blame even when it is not their fault. Many have low self-esteem, and can be oversensitive to criticism. Those of us with the condition frequently experience an intense need for security, and constant reassurance. Being told once that we are good at our jobs is not always enough. It helps to be told quite often.

·         Taking things too literally

Many Turner syndrome women tend to take things very literally when told what to do. Although we are good at following instructions, these need to be extremely clearly. We don’t always understand something the first time it is explained, even though we may give the impression of having done so. The TS woman can struggle to get her head round concepts which may seem overwhelmingly simple to others. Equally, it sometimes has to be made absolutely clear to the woman that she has to do something, rather than expecting her to do it without being told. (On the other hand, she may very quickly grasp an essential feature of a situation which others have failed to perceive.)

·         Clumsiness

The difficulties can be very apparent with practical tasks, and some women may appear to be rather clumsy at times.

·         Need for routine

Some TS women have a definite dislike of sudden disruptions to routine, or unexpected changes of plan. Clearly this cannot always be avoided, but this may explain why the TS employee seems unusually distressed in that situation.

·         Planning

There are occasional problems with planning time and prioritising a heavy workload. Some women can work independently without any problems at all - others may need clear guidance as to which tasks should be completed first.

·         Medical appointments

It may be that the employee needs time off occasionally to attend hospital appointments. The time needed will vary hugely from woman to woman - it could be an hour a year or a few hours a month. A woman with Turner Syndrome is generally conscientious enough that she will only take time off work where it is genuinely needed, so it is important for the employer to remember this, and to be as understanding and flexible as possible.

Relationships with colleagues

·         Especially if she feels tired or stressed, relations with colleagues can be strained. (Of course, TS women are not the only ones who experience this.) Occasional outbursts of temper are not unheard of. Such behaviour is relatively unlikely, and is rarely prolonged, but, if it does occur, it should be made clear that it is inappropriate. There is no reason why she should not respond well in this situation.

·         There can a strong reluctance to accept another person’s point of view in any given situation, with an occasional tendency towards obstinacy

·         Some TS women find it hard to pick up on body language or facial expressions to judge another person’s responses. So they may not always realise if someone is irritated with them. Again, openness is the best policy, and the TS woman will respond well and readily modify her behaviour accordingly

·         Some may find it hard to feel part of a team, and remain isolated, at least initially. This can extend, in particular, to social gatherings outside work, where the TS woman may find it hard to play a full part in the conversation and feel awkward. (In some instances, of course, hearing difficulties may be a crucial factor.)

It should be made clear that the difficulties outlined above cover a broad range of problems. Not all women are going to display all these types of behaviour, and certainly not all of the time!

As well as the difficulties, TS women can bring many qualities to the workplace, which any employee would be grateful for.

Again, these are only the broadest of generalisations, but such qualities can include:

·         Honesty, sincerity and loyalty – many stay in the same job for years on end

·         A good sense of humour

·         Most will inspire tremendous affection among colleagues

·         We can bring a fresh and innovative approach to problem solving, and a fresh perspective on any given situation

·         Many are conscientious and hard-working, with real determination and a strong desire to succeed and put in the hours needed to do well

·         With the right support, TS women can amaze themselves and others with the sheer scale of their achievements.

A note on disclosure

Who to tell? What to tell? How much to tell? Disclosure of Turner Syndrome is fraught with potential pitfalls, and is never going to be easy, either for the woman with TS or the even the person being told the information. The workplace is no exception, and all sorts of things will be going through the mind of the TS applicant as she puts in for a new job. Do I put Turner’s on my application form, so they know from the start? Shall I mention it at interview? Will it put them off? If I only tell my new employers once I’ve clinched the job, will they be annoyed at me for not telling them sooner? In truth there is never a right or easy stage in the application process to discuss the condition, and every woman must do what feels right for her at the time that she feels is right for her.

The employer should realise that disclosure is a big step for the TS woman. For her part, she must sure she sits down with her employer at a mutually convenient time, and gives as much frank and honest information as she feels able to.

Above all, it should be stressed that Turner Syndrome is not something to worry about.