Understanding Multiple Sclerosis: revealing the truth behind the myths

Jack Osborne’s recent diagnosis with MS, after losing 60 percent of the vision in his right eye, seems to have had more effect in raising awareness of the condition than MS Awareness Week managed to achieve earlier this year.

The son of the world-famous Osborne family is the latest celebrity to be diagnosed with the neurological condition which today affects around 100,000 people in the UK.

Media over reaction?

The portrayal of the condition in the media is often more dramatic than the real life experience of individuals and their families affected by MS; as Jack Osborne himself is quick to point out. Far from the front cover of People magazine which describes Jack as "fighting to save his vision, his future, his life", the 26-year-old father tells the magazine, "My life is far from over."

Remaining positive, his new motto is ‘‘adapt and overcome’’, and he adamantly states on Twitter: “Dear journalists…will you please stop sensationalizing my situation to sell your poorly written magazines and papers. I AM NOT DYING!”

This coverage has also prompted a number of stories from other people with MS, giving a more balanced view of life with the condition, such as Alasdair Palmer in the Daily Telegraph, Richard Price in the Daily Mail and Frances Medley in the Western Mail.

Public perception

Many people without personal experience of this illness will think of the most extreme cases, often exasperated by the media.

Some of the myths of the condition include: you can die from MS; once diagnosed you will have to give up work; you will end up in a wheelchair; you will not be able to do much exercise and you will not be able to have children.

A recent survey in Scotland by the Multiple Sclerosis Society, launched to mark MS Week and draw attention to the emotional and social effects of the condition, has revealed "alarming stigmas and attitudes" to disabled people and a lack of understanding about the condition. Statistically Scotland suffers the highest rate of MS in the world, with 10,500 people diagnosed. Yet almost half of sufferers said their symptoms have been mistaken for drunkenness, and three-quarters have experienced someone questioning the fact they have MS because they "looked well".

Patricia Gordon, director of the MS Society in Scotland, states: "Because it's poorly understood, living with MS can turn a simple shopping trip or social event into an ordeal – where strange looks and hurtful remarks can all be part of daily life.

"Yet people with MS have the same aspirations as anyone else. Most want loving relationships, an active social life and a successful career – and they can have this, given the right support and understanding - MS presents many challenges, but society can place further unnecessary barriers in the way of people with MS, making it harder than it needs to be to live a full life."

The facts

MS is the most common disease of the central nervous system, affecting young adults who are typically diagnosed when they are in their 20s and 30s.

The Multiple Sclerosis Society website explains the complexity of the condition, which has many symptoms affecting people in various ways. ‘‘MS is different for everyone. Individuals will experience different symptoms at different times and the impact of the symptoms on working life will very much depend on the type of work, and personal experience of MS,’’ states the charity.

‘‘Most people won’t experience all the symptoms and certainly not at the same time, and there are also other conditions with similar symptoms to MS.’’

Physical symptoms might commonly include vision problems, balance problems and dizziness, fatigue, bladder problems and stiffness and/or spasms. Other symptoms include problems with the bowel, speech, swallowing and cause tremors. MS can also affect the memory and thinking; having an impact on emotions as well affect sexual function for men and women.

Challenging misconceptions

According to the Multiple Sclerosis Society, people don't die from MS itself and most people with MS will live just as long as anybody else. Sometimes people who are very badly affected get more infections, or pick up other illnesses more easily than healthy people, and they can die from these. However, MS does not kill. Many people with MS never experience symptoms severe enough to stop them working and the vast majority of people will not end up in a wheelchair.

Moderate exercise is now recognised as an important element in maintaining general health and well-being. However many people with MS do not exercise on a regular basis. The charity explains: ‘‘The symptoms of MS may make some activities difficult or require a different approach, but there are organisations which offer information on all manner of activities from competitive sports to more leisurely pursuits.’’

Furthermore, pregnancy has no long-term effect on the course of MS and a woman with MS is no more likely to experience miscarriage, stillbirth, birth defects or infant death than a woman who does not have MS. Also, MS is not inherited in the way that eye colour is passed down genetically, although family members do have a slightly increased risk of developing MS, but that risk is still small.

Removing barriers

The Daily Telegraph Columnist Alasdair Palmer, diagnosed with MS 20 years ago, says the disease is ‘‘not a death sentence’’ and reassures the Osbournes that there is ‘‘hope’’. His best advice is to ‘‘ignore advice’’ and focus on ‘‘getting on with your life.’’

While scientific discoveries are still being made into the causes of this complex condition and the search for a cure, it is high profile cases like these that act as a platform for raising awareness and improving our understanding of MS. It is vitally important that those affected by MS keep talking to others around them and share their experiences in order to educate the public and change society’s attitudes towards this condition, helping those with MS to fulfill the life they wish.