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Information Team news - June 2007

Way Ahead 2007;11(2):3
  1. Sexuality and MS: a guide for women
  2. Sexual issues chatroom transcript
  3. Disease modifying drug therapies: new revised booklet
  4. MS Trust factsheets

Sexuality and MS: a guide for women

The MS Trust, in partnership with Nicki Ward-Abel, lecturer and practitioner in MS, University of Central England, Birmingham has published a new book to help women with MS to talk about their concerns, not only to healthcare professionals but also to their partners and friends.

Typically one of the ways we judge demand for a new publication is to look at the frequency with which a particular topic crops up on our enquiry service, but despite our so-called liberated age, sex is still something of a taboo subject, so perhaps not surprisingly, we very rarely get enquiries about sex! Yet up to 80% of women with MS report some degree of sexual difficulties at some point in their lives. Sexual problems remain under-reported and under-diagnosed, despite the fact that many difficulties can be overcome.

The book developed from Nicki's experience of working with people with MS. As Nicki explained: "Sexual problems are more common in people with MS than in the general population. There was a real need for a book that not only examines how MS affects sexuality and the sexual response, but also includes suggestions about what can be done about problems experienced. I knew from my research and from what women themselves had told me, that there was no information out there."

To make the book as relevant as possible we asked women with MS to tell us how they felt about sexuality and intimacy. Their responses helped to shape the book and their feedback at all stages has influenced the content and design. The main sections of the book cover:

    cover of Sexuality and MS: a guide for women
  • A woman's sexual response
  • MS and your sexuality
  • Improving your self-esteem
  • Intimate relationships
  • Talking to healthcare professionals
  • Resources
  • Partner's perspective

The book offers practical advice, comments, opinions, experiences and tips for coping with sexual problems from women with MS. It also highlights the need to maintain intimacy when sex is off the agenda and encourages women to explore different ways to enjoy physical closeness with their partner.

Aside from the physical symptoms of MS and advice on how to deal with these, the book also tackles the psychological impact that MS can have on women, particularly in terms of altered body image and self-esteem.

"The amount of self-confidence I have has slipped away as the effects of MS change my life. From big things through to small, I feel I am disappearing. Things I could do that were part of me, and showed who I am, are going." Lora

If a woman is experiencing sexual difficulties, then it is likely that her partner will also be affected. Many couples find it difficult to discuss sexual matters and when one of the partners has MS, it can make the whole subject more emotionally charged, so we have included a section for partners to read and suggest ways of raising the subject with a partner or discussing the topic with a healthcare professional.

"MS requires us to overcome barriers and to discuss issues which are intensely personal and which before our illness we would have been able to keep private had we wished. For example, issues like incontinence and lack of mobility, things which are hard to discuss and painful to admit to. I would urge everyone to be more open to solutions and to discussion than they might have been before their diagnosis." Esther

This is a sensitive subject to tackle and we hope the new book will help women with MS talk about their concerns.

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Sexual issues chatroom transcript

The MS Trust ran a chatroom session on 24 April on 'Sexual issues and MS'. Our next chatroom will be on 'Employment issues and MS' in the Autumn.

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Disease modifying drug therapies: new revised booklet

Disease modifying drug therapy: what you need to know is a completely revised version of our ever-popular booklet on this topic. It is designed to provide basic information to help individuals who are thinking about going on one of the beta interferon drugs or glatiramer acetate, the booklet sets out the main issues in an easily accessible format. It covers topics including:

  • the referral and assessment process;
  • the benefits and drawbacks of each drug;
  • questions to ask before starting on treatment.
  • New to this edition are:
  • neutralising antibodies, when and why they matter;
  • the ABN's 2007 prescribing guidelines; travelling with the DMTs; and
  • a revised list of the prescribing centres.

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MS Trust factsheets

The MS Trust range of factsheets is a series of publications for people with MS that provide an accessible overview of the information and issues that regularly crop up from our enquirers, these may be symptom-based or cover broader issues around MS and contain details of other useful organisations. Titles available include:

  • Bladder problems
  • Bowel problems
  • Cannabis: background to cannabis-based medicine
  • Cognition: memory and concentration
  • Conception: pregnancy and becoming a parent
  • Diet
  • Fatigue
  • Linoleic acid
  • Pain
  • Talking about MS: for the newly diagnosed

We also have a selection of factsheets that are topical, or where the information is changing rapidly, including the following new topics which have been compiled due to recent interest:

Functional electrical stimulation (March 2007):
FES is a form of treatment to aid mobility. It was first used in 1961 to correct dropped foot in people who had had a stroke. It has been used in MS since 1971. This factsheet describes who may benefit from FES, risks and side effects, current research data and how to find out more about treatment.

Low dose naltrexone (April 2007):
Naltrexone is a drug used to treat people with drug addictions. In 1980, a New York doctor found that low doses seemed to help people with cancer, AIDS and MS. This factsheet describes how the treatment is thought to work and information on past and current trials.

Esperanza homeopathic neuropeptide (May 2007):
This is an unlicensed homeopathic product whose active ingredient is derived from cobra venom. The product has only been available at a clinic in Freeport, Grand Bahama Island in the Bahamas. However, the company has indicated that it will become available in the UK soon. This factsheet gives further background on the product, including cost, how it is thought to work and current research information.

Why not make sure you have the most up-to-date versions of our other factsheets in this range:

  • Aimspro (March 2006)
  • Mitoxantrone (July 2006)
  • Sativex (April 2007)
  • Stem cells (January 2007)
  • Tysabri (May 2007)