Multiple sclerosis (MS) is a chronic and one of the most common disabling neurological conditions amongst young adults in the northern hemisphere. Over 2,000,000 people in the world have MS with up to 60% of them suffering long-term disability. The disease affects the central nervous system i.e. the brain, spinal cord, and optic nerves resulting in muscle and motor disturbances, sensory and visual impairment, symptoms related to bladder & bowel disorder and psychological problems. The cause is not well understood and despite intensive research worldwide, there is still no cure. However, its progress and consequences can be treated in order to improve the quality of life of the sufferers and their caregivers.
World MS Day was launched on 27 May 2009 with over 200 events in 67 countries. It’s an opportunity to raise awareness about MS and to strengthen the network of people living with MS across the world. This year it will be celebrated on 25 May 2011 and it aims to bring together individuals, groups and organisations fighting to improve the quality of life of people with MS and those affected by it.
Many people with MS are able to work for years after diagnosis. But many have to give up work, when greater understanding of the disease would enable them to stay. A lack of certainty combined with the variety of different jobs that people with MS do, can raise complex issues in the workplace. A survey in 2010 revealed that almost half of those who gave up work due to MS did so within 3 years. The theme for 2011 is employment (Work and MS). In order to help understand what kinds of policies are already in place and where changes need to be made, employers and employees can fill in a survey called ‘MS and Work: The Employers Perspective’ that will help the Multiple Sclerosis International Federation to find out what kinds of policies and facilities are already in place to support people with MS.
Fact Sheet on MS
MS is not easy to detect or diagnose because early symptoms can be confusing and other diseases of the central nervous system have some of the same warning signs. There is as yet no definitive neurological or laboratory test that can confirm or rule out MS. The increasing awareness of MS amongst the public and the medical fraternity, and wider availability of investigations like MRI are helping rapid and accurate diagnosis of MS in India. Continued efforts for community awareness are vital for progress in this direction.
Who gets MS?
Anyone may develop MS but there are some patterns. Twice as many women as men have MS. Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited. It was considered to occur more commonly among people with northern European ancestry but now with newer diagnostic tools like MRI available, people of African, Asian, and Hispanic backgrounds are also diagnosed with MS.
Is it contagious?
No. MS is not contagious and is not directly inherited. Studies do indicate that genetic factors may make certain individuals susceptible to the disease.
Can MS be cured?
Not yet. There are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.
What treatment is available?
Doctors may recommend treatment with one of the FDA-approved "disease-modifying" drugs as soon as possible following a definite diagnosis of MS as “active” or “relapsing” disease. These drugs help to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain, and may slow the progression of disability. Other approved disease-modifying drugs may help in reducing disability and/or the frequency of attacks in patients with secondary-progressive, progressive-relapsing or worsening relapsing-remitting MS. In addition to drugs that address the basic disease, there are many therapies for MS symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness, and cognitive problems. People should consult a knowledgeable physician to develop a comprehensive approach to managing their MS, and take an informed decision regarding the chosen line of treatment.
Let’s spread awareness about MS
Living with MS
- Never feel ashamed of having MS – it is a condition that you happen to have and not something you've brought on yourself.
- You will live a different life from what you have known before, but it is definitely not over for you. Divert your energies towards your well-being and do this with complete determination. Not everyone with MS ends up in a wheelchair. In India, our families are our biggest support and strength. Build on these blocks of love and support. The biggest boon for us is that we have the joint-family system in India, and our families care. YOU ARE NEVER ALONE!
- Life is a challenge - set yourself a challenge to achieve each day, however small. Try not to let MS rule your life - keep in touch with people who do not have MS and don’t allow yourself to be defined as an MS ‘sufferer’. You are a person who happens to have MS – it does not change the essence of who you are.
- Be realistic and know your limitations, but don’t aim too low! MS is not an excuse for ducking out of life! Concentrate on what you can do, not what you can’t.
- Our body should not be our problem. Listen to it. It’ll tell you when to do various tasks in order to adapt to your changed life-style; rest when required and set your schedule at the pace you are comfortable with. Do not hesitate to ask for help and do not needlessly overexert, for it could take a toll on your already fragile health.
- Make special efforts to look good - even if you are feeling low; it brightens your mood and also that of the care-givers around you. Purchase clothing that looks bright and cheerful, and makes you feel and look good. This will help to lift your spirits.
- Don’t allow yourself to feel isolated. It is always helpful to talk to other people with MS, either face to face, on the phone or over the Internet.
- Wheelchair mobility training is available in big cities. Make it a point to go for training to make yourself independent. Plan ahead before you go out: find out about accessible WCs, ramps and lifts etc to avoid unpleasant surprises. All airports and stations should have ramps available to help you to get on and off planes and trains. Let the airport or railway staff know in advance if you will require assistance. Once they are informed, the railways and airport authorities can allocate a seat with extra leg room and closer to the toilet and entrance.
- Multiple Sclerosis Society of India (MSSI) assists people with disabilities to make adaptations to their home. Regular physiotherapy can often be helpful. If you have double vision, wear glasses (plain glass is fine) and cover one lens with tape or ask about plastic prisms for your glasses.
- Fatigue is a common symptom of MS and not just a sign of feeling low. If you have experienced bladder or bowel problems, ask for a continence expert – these problems can be successfully managed and a Urologist can provide a great deal of valuable advice and support. Learn singing, it can help relieve the symptoms of choking and it is also good therapy for your speech and spirit.
- Do not get nervous if some new symptoms appear which you are not familiar with. Every new symptom is not caused by MS. Keep a record of when these symptoms appear and how long they last. If you have swollen feet and legs, put your feet on a table or keep a foot rest up to your waist level, use pillows under your feet while lying on the bed.
- When MS affects you, make sure you make the most of your abilities. Do Yoga, Meditation and some regular exercise if you are able to. Swimming is a good option as spending time in water can be beneficial and relaxing. Sit in the garden/balcony each day - fresh air does wonders for depression Try not to sit still for long periods of time. If possible, stand up and take a walk ever so often, to prevent stiffness in your legs. Exercising with a friend can be fun and can help to keep you motivated. If you are able to use a gym, consider investing in a few sessions with a personal trainer who can focus on your condition and devise exercises that suit your abilities.