Beyond the Ice Bucket Challenge: an interview with ALS expert Professor Ammar Al-Chalabi

6043

In honour of ALS/MND Global Day on June 21, Best Doctors is pleased to feature Part One of an interview with Prof. Ammar Al-Chalabi, a leading ALS specialist at King’s College London and director of director of STRENGTH, the world’s largest international consortium for studying the disease.

Part One

Professor of Neurology and Complex Disease Genetics at King’s College London, Director of King’s MND Care and Research Centre and Honorary Consultant Neurologist at King’s College Hospital, Prof Al- Chalabi is a recognised specialist in ALS (amyotrophic lateral sclerosis, also known as motor neuron disease) whose work involves both clinical practice and research.

a photo of Prof. Ammar-Al Chalabi

You have over 20 years’ experience as a practicing neurologist. How long have you been specializing in ALS and what motivated you to focus on this particular disease?

I have been specialized in ALS since 1994 when I moved to London. At the time, ALS care in many places was rudimentary, and many people were left with very little support or information. I began work with Prof Nigel Leigh, one of the most important figures in ALS care and research internationally. His work helped transform the landscape of care and research in ALS and inspired me to focus my efforts on the same condition.

If you were talking to someone with no medical background and who had never heard of ALS, how would you define it?

ALS is a condition that slowly but relentlessly paralyses the affected person over months, until they die when the breathing muscles become too weak to work. It has no cure, cannot be stopped and affects every aspect of life both for the person with ALS and for their loved ones. In nearly all cases we do not know the underlying cause, although we do know you cannot catch ALS.

There are two types of ALS, familial and sporadic. Apart from the fact that one is inherited and the other is not, are there any other differences in terms of progression or prognosis?

There are no obvious differences in progression or outlook between familial and sporadic ALS as far as we can tell. The only distinction is that in familial ALS the affected person will know of others in their family who have had ALS. For 95% of people, there is no family history of ALS.

What advice would you give for those who were diagnosed for the first time or for those families facing people with this diagnosis?

ALS is a life-changing diagnosis, and people react to and cope with the news differently, depending not only on their personality, but also their age, their social situation, if they have children and how much support they have around them. We spend one to two hours with someone at their first consultation, often with their families too, and then see them again within a short time in a multidisciplinary clinic. Our aim is that the affected person feels both supported and in control of their life at a time when they may feel everything has been taken away from them. ALS is a condition that changes in its impact as it progresses. The result is that as someone deals with one set of problems, another set arises. So my advice would be to seek support and help from patient organisations such as the MND Association and from specialist ALS clinics which have the knowledge, experience and connections to make a desperate situation a little less so.

There is no cure for ALS to date, but advances have been made in slowing progression and improving quality of life. What particular advances are you most excited or optimistic about?

This is a very difficult question to answer as there are so many! Probably the most striking change has been in the technology available now compared with say, twenty years ago. Researchers can now work closely together as never before, can answer research questions that would have been impossible even a few years ago, and can think about ALS in completely new ways as a result. The advances that interest me most are those in genetics and related areas. As we find more and more genetic risk factors we will understand how those genes work together and it should make clear what causes ALS. That would then allow the development of drugs to target the pathway to stop motor neurons dying.

Part Two of this interview will be published this Thursday in The Health Blog.

 

Leave a Reply

Your email address will not be published.