Open Door: May 2014
A free, quarterly newsletter for people with multiple sclerosis, their family and friends and supporters of the MS Trust.
Every issue we report on our work, aiming to make life better for everyone affected by MS, and suggest ways you could get involved.
We also round-up the most relevant MS news and research projects; share the real-life stories of people living with MS; and introduce advice from healthcare professionals that could make a practical difference to you today.
- Looking for previous issues of Open Door? Visit our Open Door archive to browse every article since 2001.
- If you would like to receive a copy of Open Door in larger print, please get in touch.
- Sign up to receive your free copy of Open Door by post or email.
Read the latest issue of Open Door exactly as it appears in print:
Latest news from the MS Trust including reports on:
New drugs for relapsing remitting MS
- Teriflunomide (Aubagio) - now approved for use by the NHS in England, Scotland, Wales and Northern Ireland
- Alemtuzumab (Lemtrada) - NICE says yes in final draft guidance
- Dimethyl fumarate (BG-12, Tecfidera)- SMC says yes, but NICE have given an initial no
NICE has published a draft of the revised clinical guideline Management of multiple sclerosis in primary and secondary care and has invited comments from registered stakeholders.
As this edition of Open Door hits your doormat the preliminary results of the Department of Health (DH) Risk-sharing Scheme (RSS) will have been presented at the Association of British Neurologists meeting, and by the next edition we hope the full results will have been published in the Lancet or BMJ.
A round up of the latest MS research:
Currently there are no disease modifying treatments available for people with secondary progressive MS (SPMS). This study looked at the effect of high dose of simvastatin in people with SPMS. Simvastatin is already licensed for lowering "bad" cholesterol in the blood and so is used to reduce the risk of heart disease and stroke.
Many people with MS use complementary and alternative medicine (CAM) treatments such as acupuncture, Chinese medicine and homoeopathy in the management of their disease. However they're often also using conventional drug treatments (CDTs). This study looked at whether people with MS understood the risks that their CAM might interact and interfere with their CDT.
Sexual activity is an important part of life for many people and contributes to their quality of life, the quality of their relationships and to their self-esteem. We know that MS can affect aspects of sexual function in both men and women. These studies looked at how common these issues are.
This June the MS Trust is bringing Europe's largest conference on MS rehabilitation to the UK for the first time. We hope this will be a big step towards better rehab services for everyone affected by MS. But what exactly is MS rehab? Over the next few pages we speak to health professionals and people with MS to find out how it could work for you.
Rehab professionals can help you work out ways of dealing with some of the common problems MS can cause and support you to draw up practical goals for living the way you want to. On these pages some of the UK's leading experts talk about how MS rehab has changed over the years and how it can help you today.
MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what's available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.
The MS Therapy Centre in Norwich, like many therapy centres around the UK, offers a range of rehab services that could support you to continue living a full, active life. Wendy Hendrie works at the centre as an MS Specialist Physiotherapist. Here she explains exactly what practical support she can offer and the difference it can make.
MS is most often diagnosed between the ages of 20 and 40, when many people may be thinking of having a family. In this article Janice from the MS Trust information team explains what you might have to think about if you have MS and you're considering having a baby.
Around 75 per cent of people with MS experience bladder problems and these can have a big impact on your everyday life. However it is often possible to treat these and simple management strategies can make a real difference.
Karen Walker took part in a skydive for the MS Trust in December last year along with a group of her friends who all have MS. Here she tells us how they went from meeting on an MS course in Sheffield to climbing 13,000ft together in a light aircraft!
Rod McLaren is a writer and artist who was diagnosed with MS last year. Ahead of this year's MS Trust Secret Art Show, Rod considers the challenges of depicting an 'invisible disease'.
Visit our Open Door archive to browse every article since 2001.