March is MS Awareness month: help me fight my fight

rachael hunter - 3 Mar 17

Multiple Sclerosis (MS) is a feminist issue. While you may not be effected by MS directly please read on to understand more about how many women are affected by it. Consider lending your support to my campaign to stand by your sisters who live with MS. Share this information to help people diagnosed with this life changing disease have more choice about the information they receive, and the choices they make.

When I was diagnosed with relapsing remitting Multiple sclerosis in 2012 I knew nothing about MS. As a doctor of clinical psychology I was used to hitting the books, so I quickly learned that MS affected the nerves in my brain and spinal cord. And that it affected over 100,000 people in the UK.   ‘Sclerosis’ refers to the scarring or hardening of tiny patches of tissue and ‘Multiple’ is used to reflect the fact that this happens at more than one place in the brain and/or spinal cord. My immune system had started to attack itself, damaging nerves and attacking the myelin, which is the fatty protein coating wrapped around the nerves. Through my fatigue I sat and read that it was both an autoimmune disease and neurological condition. I learned that it was “progressive” and would likely lead to disability in the future, affecting my cognition (thinking, memory and attention stuff) and my mobility among other things. Shit. I could see from my research that MS was hugely variable and affected some far more than others though there was no way of knowing how it would affect you. I read that there were more and more medications becoming available despite the fact they still didn’t really understand why people developed MS.

In particular I learned about the different ‘flavours’ of MS.  Some types quickly progress and symptoms worse over time. Relapsing remitting MS is the most common and involves periods of symptoms which eventually go away before returning months or years later. With new symptoms. I was told that over time (10 -20 years) this would progress to secondary progressive MS and difficulties would be more permanent. That is, unless it was benign. Obviously, I was keen to find out what I could do to ensure my ‘benign- ness’ and was frustrated when told that you only got this label after being relapse free for 10 years… Oh. I asked again, what can I *do*? At which point I was told that we would simply “watch and wait”. Less of a treatment approach and more of a medical term for “cross your fingers”.

I learned that women were two to three times more likely to be diagnosed than men. I was apparently I was a classic case; female age 20-30y. I found myself chatting online to scores of young women who had been diagnosed with MS.. Normal, everyday women. Women with children, or who wanted to have children. Professional women at the peak of their career. Working mums. Stay at home mums. And women who desperately wanted to be mums but were now frightened about how it might impact the MS. Young women on the cusp of adulthood with so much to offer. Women whose lives had just been blown apart by this life changing diagnosis. Many of whom were told to “watch and wait”.

Now. I’m not the kind of woman to be told what to do. The thought of taking someone’s word for it did not sit well with me. I also happened to have enough experience of the healthcare system to know that medicine was fallible and very often based on a huge amount of guess work. I knew that if I did my research it wouldn’t take me long to find out as much as I could about MS and what I could do to give myself the best chance possible. And when I started looking it didn’t take me long to find evidence that there actually was a lot of things I could be doing.

In the 1950’s a senior neurologist called Roy Swank began an intervention study in the US of a large group of people with MS and followed them over a period of 32 years. This study demonstrated that making these dietary changes (low saturated fat and plant based diet) had a positive and sustained impact on people with MS symptoms and the majority of the patients involved in his research avoided the progression of their disabilities. The difference between those that changed their diet and those that did not was remarkable. for me this was the holy grail. Since Swank’s work the role of diet in disease progression has largely been neglected. We could speculate about the reasons for this; perhaps developing and researching drug treatments was a more profitable and attractive notion for drug companies than evaluating the impact of simple, practical intervention such as diet? But that is perhaps a different story…

Most recently, the work being done by the HOLISM team at the University of Melbourne has demonstrated in one of the world’s biggest medical journal’s (PLOS ONE), that a healthy, low saturated fat diet, more exercise, not smoking, taking plant-based omega 3 supplements and moderate alcohol consumption have the strongest associations with less disability, even after controlling for all other factors including medication use.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0161701

Advances in understanding and assessing people with MS who have made lifestyle and diet based changes mean that researchers have been able to examine how factors affect one another and consider the unique contribution that individual factors (such as diet) have to disability. The results are equally as compelling as Swanks work.

I began to realise that there were a tens of thousands of women like me, being diagnosed with MS and being told to ‘watch and wait’. Women who were strong and intelligent and who could make their own choices about what changes they were willing to make to their life. Women who were bright enough to read the information and evidence I had gathered, and then draw their own conclusions. women who wanted to give their children the healthiest start in life. Thousands of people who were having that choice taken away from them.

Over the last five years I have spoken to far too many women like @TrippingTreacle who wish they had found this information earlier. Who would have made the dietary changes promoted by www.overcomingms and the Swank diet ten years ago if only they had known about the positive effect they can have on disease progression. Ten valuable years that could have made a big difference to the MS symptoms they live with. I have also spoken to so many inspiring older women, who were diagnosed in their 20’s and made these changes on their own, like me, and who remain mobile and healthy 40 years later.

I have also felt let down by the responses of medical professionals who thought that making radical changes to diet and lifestyle, to reduce saturated fat and stress was “extreme”. Better to “watch and wait” they said. I was frustrated to read that these approaches were dismissed as “lacking evidence” and the words of “crazy” people, on the forums of National MS support organisations. It made no sense to me that while everyone accepts that diet plays a role in the development of coronary heart disease, people think that the same being true for MS was such a radical idea and so unlikely!

Five years on and I have changed my diet and life considerably. I’m a pescatarian vegan who exercises regularly and changed jobs to avoid stress. In May I will be 5 years relapse free, with steadily improving symptoms during that time. Recently I had my first MRI in five years, and while my really lovely neurologist opened discussions about treatment options, I suggested we “watch and wait” for the results (and yes, I did take great pleasure in saying that). When my results demonstrated no new or active lesions. He concluded that things were “stable”. I concluded that I was kicking MS’s butt.

Now I want EVERYONE to have access to the information I found. I want the NHS to treat us like intelligent human beings who can consider the evidence, weigh up the pros and cons and make our own decisions. Allow us to be the judge of whether WE think making changes to our diet, and our family’s diet, are worth it. I am campaigning for the NHS to acknowledge that making lifestyle changes does have a direct and positive impact on MS. Specific changes to diet and not just a ‘we recommend eating a healthy diet’ cop-out. I want them to include details in the information that people diagnosed with MS receive and let people make their own mind up. I want them to them to direct people to good, sound evidence. When we look back on this in years to come and realise that people knew that changing your diet could affect the progression of MS, and they didn’t tell us… There’s going to be a whole load of trouble.

There are so many  people out there getting diagnosed with MS every week.

And a large majority of them are women.

I didn’t think I would be one of them.

Almost all of those people diagnosed don’t get told about all the things they can do to stabilise their condition. Many of them, like me, don’t want to ‘watch and wait’ and if given the right information many of them wouldn’t want to. Many of them would get up and start to kick MS’s butt too.

support my campaign #mymsmychoice

Dr Rachael Hunter is a mum of two, a Clinical Psychologist, Researcher and Senior Lecturer in Psychology. She blogs at  www.memsandbeingmum.wordress.com and shares pictures and information on Instagram @myomslife

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