ASIANS LIVING WITH MULTIPLE SCLEROSIS
(18 April 2003)

There are many Asians in Britain with Multiple Sclerosis (MS). Infact it is the most common disabling neurological disease affecting young adults. There are estimated to be around 85,000 people with MS in the UK - about one in every 700 people. Every year 2,500 new diagnoses are made, approximately 30% of which from among Ethnic minority communities. MS is an unpredictable and variable condition caused by scarring to the myelin sheath which effects the nerve fibres in the brain and spinal cord.

For sufferers it can "be lonely, traumatic, painful, soul destroying experience," says Sanjay Chadha, founder of the Asian MS Support Group set up in 1997. "I realised coming from the Asian community, contrary to the views of non-Asian people, was of little help. In fact I felt isolated, misunderstood and made to feel that my immediate family and I were responsible." Here he shares his own, poignant experience.

Sanjay Chadha: My Multiple Sclerosis (MS) Journey So Far

It seems a long time ago yet every detail is still very clear. My first memory that something was not quite right was when I was doing my 'A' levels 18 years ago. My right leg and arm lost co-ordination and power, subsequently I discovered this was called a relapse. Hey, I was young with the world to conquer. I didn't have time for this nuisance and so (like many people with MS) the long denial began. Added to this the medical profession appeared bemused. I seemed to be back to normal. It's termed a remission, don't you know. So off I went to University and then started a career in the IT sector.

Sanjay Chadha(left) , founder of the Asian MS Support Group with Bollywood actor Shah Rukh Khan at the Asian Awards Ceremony in 1998.

But then, after several more relapses and remissions, it was clinically definitely diagnosed. I heard it and heard it again yet I still didn't have time for it. Pretty powerful, this denial stuff. That was helped by being a proud Punjabi and born in east London, great combo! To cut a longish story short I started using a wheelchair four years ago, partly driven by the fact that I discovered I could carry on seeing West Ham Utd and free of charge. The Indian in me overtakes things at times.

Then I decided to take ill-health retirement, as I really needed to take this nuisance seriously. Oh I forgot, amongst all that I got married and have two lovely sons.

Eighteen years of living with MS has far from been easy. My brief account may appear light-hearted but I know from first hand experience it can be lonely, traumatic, painful, soul destroying and a hell of a lot more. I realised coming from the Asian community, contrary to the views of non-Asian people, was of little help. In fact I felt isolated, not being understood and made to feel my immediate family and I were responsible. I also knew there must be other Asians suffering in a similar way. So rather than suffer in silence (you wouldn't expect that from a Punjabi cockney) I decided to do something positive. Along with a person in a similar predicament, I started the Asian MS support group in 1997.

We are affiliated to the UK Multiple Sclerosis Society and have developed a Hindi cassette 'What is MS?' and recently launched an Urdu translation of 'Newly Diagnosed with MS' brochure. These help to explain an already confusing condition to Hindi and Urdu speakers. We're now working on research is being conducted for other translated material.

Sanjay Chadha with Bollywood Actor Gulshan Grover.

The Asian MS Support Group aims are:

• To raise awareness and dispel ignorance of MS within the Asian community
• To provide a telephone support service for Asians with MS, their carers, friends and family
• To focus on putting fun and dignity back into the lives of Asians with MS and their carers

Contact details for the Asian MS Support Group are :

Sanjay Shah
Asian MS
MS Society
372 Edgware Road, Staples Corner
London, NW2 6ND
Tel:0208 438 0700
asianms_south@hotmail.com
asianms_north@hotmail.com.
http://www.mssociety.org.uk/asianms/English_Index.html

Alternatively visit MS Society website or call the freephone helpline: 0808 800 8000.

There is much work needed to help the growing number of Asian people with MS and avoid them suffering in silence." Asian people with MS do not want to be invisible and become a forgotten community within a minority ethic community." concludes Sanjay "let's all be included and share the Asian success phenomenon."

Click here for Ten Quick Facts about MS.

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