World Multiple Sclerosis Day 2016- 'Independence'

• World MS Day 2016 is celebrated on 25^th May 2016
• Worldwide there are 2.5 million people who live with Multiple Sclerosis
• This year’s theme for World MS Day is 'independence'

World MS Day 2016 is celebrated to raise awareness about multiple sclerosis (MS) which affects the quality of life without necessarily affecting the life span of the affected individual.

Facts about Multiple Sclerosis (MS)

• 2.5 million are affected by MS across the world
• The ratio of women:men is 2:1
• MS is most prevalent in New Zealand, Australia, Northern Europe and Northern America
• It is believed that Viking genes are particularly susceptible to MS and that Scottish migrants resulted in the spread of the condition across the world.
• Certain ethnic populations are found to have lower incidences of multiple sclerosis though they live in regions where there is a high incidence of MS like the Maoris of New Zealand and the Lapps of Northern Scandinavia.
• It is caused due to an environmental trigger that affects the myelin sheath of neurotransmitters of people genetically predisposed to the condition. There is a disruption of signals to and from the brain.

Symptoms associated with Multiple Sclerosis (MS)

The symptoms associated with MS are due to the disruption of signals between the brain and the rest of the body leading to:

• Numbness
• Pain
• Memory problems
• Vision blurring
• Speech problem
• Tingling sensation
• Paralysis

Everyone reacts to MS differently. Some people have relapsing-remitting MS where symptoms are acute during certain phases and in certain other phases, there is complete ease of symptoms or lowering of intensity of symptoms. In progressive MS, there is a gradual and ongoing loss of function without any specific attacks or acute phases.

There are disease modifying therapies that exist for people with relapsing-remitting MS, which can slow down the deterioration due to MS. There is ongoing research to find a cure or to rectify the fault in brain connectivity caused due to MS.

Vitamin D and Multiple Sclerosis (MS)

Vitamin D has been found to delay symptoms of MS and if children are exposed to a lot of sunlight, they have lower chances of developing the disease as they grow up.

'Independence'

The theme for this year's World MS Day 2016 is 'independence'. People with MS become increasingly dependent on caregivers and family members even for the smallest of chore. This year, the organizers hope to infuse confidence among people with MS and aid them in taking control over their lives.

An essential aspect of independence is ‘employability’. When a person with MS is able to work and earn a living, that instills confidence and leaves them with greater scope for leading a less dependent life.

Tips for increasing independence of people with Multiple Sclerosis(MS):

• Employability
• Wheelchairs that are easy to use
• Wheelchair ramps at malls and buildings
• Better support in public transport system

To mark the World MS Day 2016, here are excerpts from an interview with the Founder member of Chennai Chapter of Multiple Sclerosis Society of India (MSSI), Ms. Ann Gonsalvez:

Q. What has been your motivation?

A. I have always been interested in social work and have worked with YWCA on a lot of social causes. When someone approached me with a suggestion to start the Chennai Chapter of MSSI, I agreed readily. I belong to a family of doctors and there was a natural inclination to help people with multiple sclerosis.

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Q. What are the difficulties faced by people with Multiple Sclerosis (MS) in India?

A. Primarily the loss of a job is a huge burden on them. The financial strain is not only for the individual but the family as well. The cost of treatment is very high and amounts to a minimum of 3 lakhs alone for β interferon injections per year. This makes it tough for people in the rural areas to care for their loved ones with multiple sclerosis.

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Q. What forces people with Multiple Sclerosis (MS) to lose their jobs?

A. People with MS face blurred vision that could lead to an inability to continue working. Moreover, they need to empty their bowels very often, which can lead to a lot of embarrassment at work. Individuals with this condition feel shy to get up and go to the toilet often and if they try and control it, it can lead to voiding right at their seat, which further increases humiliation.

When they try to hide their condition from their employers and colleagues, it could lead to embarrassment and if they discuss their condition, it could lead to termination, sooner or later.

Q. How does MSSI support people with Multiple Sclerosis(MS)?

A. We provide wheelchairs, injections and physiotherapy services free to people who are really in need. We either buy the injections and give it to them or we direct them to doctors who will give them free treatment and care.

Q. What has been your most satisfying moment?

A. A girl afflicted with MS was bedridden and couldn't move. We supported her through careful medical treatment and physiotherapy services and she began to walk. She even took up a job and found a life partner. Satisfaction comes from watching people who are bedridden walk after our careful support.

Q. What is the leading cause of Multiple Sclerosis (MS) in our society? What is the most common trigger?

A. In my service, I personally feel that consanguinity could be a leading cause. Couples who marry within close relatives are at higher risk of developing this disease.

Q. What are the prevailing conditions for Multiple Sclerosis(MS) in India?

A. The West provides a lot of support for people with MS as there are greater awareness and better care for people with disabilities. Indian laws need to be changed to include people with MS under Disabilities Act; we are striving hard to achieve that.

Q. What are you hoping to achieve with greater awareness for the disease?

A. We are hoping for a better understanding of the disease and greater support for them from society. All they need is a little support which will help them lead independent lives.

Upcoming Event: MSSI, Chennai Chapter is organizing a free medical camp at Fortis Malar Hospital on the 25^th of May 2016. In this camp, people with MS can avail the services of Gynecologists, ENT specialists, Ophthalmologists and more, free of cost. 

References:

1. World MS Day
   http://www.worldmsday.org/
2. Multiple Sclerosis Society of India
   http://www.mssocietyindia.org/
3. Prevalence and incidence of multiple sclerosis
   https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis
4. MS Prevalence
   http://www.nationalmssociety.org/About-the-Society/MS-Prevalence

Source-Medindia