Our Responsibility to Research

I was just reading a blog post by Dr Eric Downer on the patient-researcher divide on 'Living Like You' and it brought to mind the need for patients to take part in research. Gandhi once said “the future depends on what we do in the present”. I know that he wasn’t talking about research and Multiple Sclerosis but it holds true just the same. If researchers do not do the research and we do not take part in that research then we are going nowhere fast; As Dr Downer said “We can read forever about the progression of the disease and symptoms in textbooks and journal papers, but we must talk more to people to understand individual experiences and hence become more informed.” Without the participation of patients such enquiries will grind to a halt. I think that if researchers have personal interactions with people affected by MS (or any other illness for that matter) it takes the illness out of the theoretical realms and lands it firmly in the personal realm.

Declan Groeger
11 Sep 2014

We owe it to future generations to help find a cure for MS and if not a cure to at least provide brake pads to stop the damned thing or at least slow it down considerably.

To my way of thinking a cure would be incredible, though unlikely. Imagine being able to walk and talk and see and not be fatigued or in pain all the time. This would be the stuff that dreams are made of; more probably pipe dreams. Immunisation for those who are susceptible would also be brilliant; that we would no longer wonder whether we had somehow passed the errant genes on to our children. Less worry = less stress for us that already have it. We already have medications on the market, and more on the way, that have a slowing effect but it is difficult to say something has slowed down when you don’t know how fast it was going in the first place!

Assisting in research doesn’t have to be painful or time consuming but it does require commitment. We owe it to our children and their children and the world at large to do all in our power to understand what causes MS because if we don’t know what causes MS, it will be exceptionally difficult, if not impossible, to find a cure.

Healthy people also have a duty to assist research. It is important for researchers to find what keeps people healthy as opposed to what allows others to become ill. The Icahn School of Medicine at Mount Sinail are looking for healthy volunteers to submit a sample of their DNA. Please give it some thought. It is quick and painless and may help others. 

Have you taken part in a research study for MS? Do you feel an obligation to be a part of MS research?

Declan

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