What is MS?

Over 150,000 of us in the UK live with multiple sclerosis (or MS), so there’s a high chance that you know someone, or know of someone, with the condition. But although most of us have heard of MS, a lot of people still don’t really know what it means or how it impacts people.

MS is a neurological condition, meaning it affects the brain and spinal cord. It’s caused when the coating that protects your nerves – called myelin – is damaged. This damage disrupts messages travelling from the brain to the rest of the body, causing a variety of symptoms.

There are three main types of MS. Relapsing remitting MS – where people have distinct attacks of symptoms which then fade away but can leave people with lasting disability. Many people with relapsing MS go on to have secondary progressive MS – where you stop having relapses but your disability steadily gets worse. The third type is primary progressive MS. It’s called this because disability progresses from the first, or primary, symptoms.

MS can affect people in countless ways. No two people’s MS will be the same, but some of the most common symptoms are fatigue, mobility issues, pain, bladder problems and vision issues. What can be particularly frustrating about MS is that these symptoms are often completely unpredictable, they can appear out of nowhere (known as a “relapse”) and then disappear – or not. This can often mean that no two days are the same when you live with MS.

Being diagnosed with MS, and adapting to the changes it brings, can be very unsettling. It may lead to a whole array of emotions such as grief, anxiety, guilt, fear, and anger.

Some people find they’re able to carry on almost as normal after an MS diagnosis, with minimal interference from MS symptoms. Whereas others may need to make adaptations to their life, such as using a wheelchair or other mobility aids, or getting some support from others to go about their daily tasks.

Who does MS affect?

Most people are diagnosed in their 30s or 40s, and the condition affects 2.5 times as many women as men.

But MS doesn’t discriminate. It can affect people of any background, age, gender or ethnic background.

There are lots of people of Asian heritage in the UK who are living with MS. But when you’re diagnosed with MS in the Asian community, there can be some very specific challenges to navigate – from cultural stigma around illness to familial expectations and responsibilities. Trishna Bharadia was diagnosed with MS at the age of 28 in 2008. She says, “some of the main challenges of being diagnosed with MS and being of Asian heritage have been explaining to family members in a language other than English about what MS is, as well as people not really having heard about MS or knowing what it is. I’ve tried to be very open about my MS as I believe that the more we talk about it, the greater chance we have of improving understanding and awareness.”

Asian MS  is a national support group linked to the MS Society that offers tailored and culturally-sensitive services for Asian people with MS, their carers, friends and family. The group’s mission is to empower the South Asian community through knowledge, support, and compassion.

They offer information and resources on MS in English and in Asian languages. They also run webinars and social sessions like a virtual ‘chai and chat’ meet up.

Research into genes and MS

Most of our understanding about genes that contribute to the risk of MS comes from studies with people of White European descent. But in the ADAMS study, Dr Ben Jacobs from Queen Mary University London is currently looking at the genes of people with MS from non-European ancestries.

These risk genes might not be the same for people from non-European ancestries, and there may be other genes within other ancestries that can help to understand why people develop MS in the first place. This could lead to better treatments, and more personalised care for people with MS, especially those from non-European ancestries.

Treatments for MS

Once diagnosed, MS stays with you for life. But the good news is that, for most people, there are a range of disease modifying treatment (DMT) options. Taking one can mean you can have fewer, and less serious, relapses. They can also slow down the speed at which your MS might worsen.

But there are still very few DMTs for people with progressive forms of MS. The MS Society is raising £100 million for MS research to find treatments for everyone with MS. Decades of research has got us to a critical point, and we can finally see a future where no-one needs to worry about MS getting worse.

But aside from DMTs, some people also manage the condition in other ways, like through diet, exercise and physiotherapy.

If you’d like support or want to find out more, you can get in touch by emailing asianms@msociety.org.uk

For more general information and emotional support, you can ring the MS Society’s free MS Helpline on 0808 800 8000 or email helpline@mssociety.org.uk. It’s open Monday to Friday, 9am to 7pm except bank holidays.