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MS: The 'white man's disease'

by Sarvat Khan

30th March 2007

Sarvat KhanMy father took me to see his doctor - Dr P - in 1996 because the diagnosis I had received from my neurologist was alien to him. The GP told us both that that I couldn't possibly have Multiple Sclerosis because it's a "white man's disease".
Is it? Why? Did that mean I had been misdiagnosed?

The mixed messages made me start me researching the disease, and I discovered that MS is a condition predominately found in temperate latitudes. The majority of carriers reside in the western hemisphere. The disease is most common in Europe, North America, Australia and New Zealand. Those areas north of 40 degrees latitude have a higher occurrence than those around the Equator. All this supports the theory that MS is predominantly a disease affecting northerly countries.

So, how prevalent is it in India and Pakistan? It's not true to say it's unheard of. Though it is uncommon, there are some cases of people with MS and I did come across a branch of the MS Society in Karachi.

On the whole MS is rare in this part of the world due to a combination of geography, diet, medical facilities and lack of financial resources to diagnose the disease - the NHS is but a dream for these people.

For the average person the facilities are non-existent. For medical matters they are often seen by Moulvi's - religious priests. Prayers will be made for the patient, two things would be suspected: either evil spirits or black magic - that's another story!

To obtain a diagnosis of MS, you either need a lumbar puncture or a MRI scan - both of which are not common or not accessible. Although Karachi has a scanner, for instance, the cost of a diagnosis can extend into thousands of Rupees, the kind of money only the very wealthy have.

Some theorise that sunlight and seasons are possible factors in the occurrence of the disease. Research shows that disease onset and relapses are more common in the springtime and less common in the winter. The variance between the seasons is more prominent in areas further away from the equator meaning MS symptoms might be more extreme or noticeable further north.

Another possibility is diet. MS in the coastal regions of Norway is lower than the rest of the country. Could this be due to the higher-level of fish consumption? Fish apparently is high in Vitamin D3 and Omega-3 fish oils; one or both of these facts may play a part.

In my own experience I have not come across a member of the Bengali community suffering the disease. Could this be due to their staple diet of boiled rice and fish?
Sarvat Khan using her mobility scooter
So why have I got it? Could genetics play a role? MS is particularly common within people of European origin, especially British and Scandinavian. It is rare in Chinese and Japanese people, who often suffer a more aggressive form of the disease if contracted.

Does the fact my father migrated to England in 1960 hold the key to my MS? According to one study, migrating from one area of the globe to another before puberty means that the individual takes on the incidence of the area to which they migrate.

First generation immigrants to Britain have a much lower incidence of MS than their second-generation counterparts. Something I'm sure no one considered when migrating. What was often unheard of in the Asian community is now affecting more Asians year on year.

Awareness of the disease in our community is gradually increasing, more and more cases are surfacing. I was fortunate enough to be put in touch with a group that is a spin off from the MS Society and closer to home for me - the Asian MS Society. They deal with the unique problems facing members of our community.

Trying to explain my diagnosis to my parents proved extremely difficult. I felt as though I was dealing with and accepting the diagnosis easier than they were. It must be frightening knowing that your youngest child has a disease you have never before heard of. Fortunately the Asian MS Society provided a number of useful articles in Urdu. Allowing my parents to gain a better understanding of what MS is and how it can be managed.

At the time they were adamant that I was never to let anyone know of the diagnosis. Disability is often something that Asians feel ashamed of and brushing it under the carpet is a natural reaction. As time passes, my parents and others have come to accept my illness as they learn more about MS and challenges it poses to both able-bodied as well as disabled people.

The numbers are creeping up as more Asian MSers brave the stigma attached to having a disease and 'out' them. Females are affected more than men on a two to one ratio. I was told just last week of a young Asian girl recently diagnosed who had been told by her parents never to let anyone know in the fear that she wouldn't find a suitable marriage partner. The sad fact is very few Asian parents would ever let their children marry a person who suffered with a chronic disease that has such an unpredictable nature.

Going back to my father's GP, Dr P, I saw him at Tesco three months ago. I was shopping on my scooter as usual. He hadn't seen me since telling me I would wake up one day and it would be gone. Poor guy looked as though he had seen a ghost; he couldn't even look me in the eye. Ironically I am now good friends with his daughter, who was diagnosed with MS a few years ago.

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