Participating in research is a difficult decision and I believe every person needs to be fully informed when making this decision.  Of course every study is different so the same opinion cannot be applied every time you are asked to become a research “subject.”  Here is what I keep in mind with each research opportunity. 

My First Exposure to Research

When I was diagnosed, one of the doctors explained to me that the lesions (areas of inflammation or damage) on my brain would never repair.  I recall staring at the first MRI slides of my brain.  All I could focus on were those white circles that indicate a lesion.  I remember feeling that this couldn’t be possible.  How could it be that my brain can’t repair itself?  I mean does it really make sense that the human body which is capable of so many perfect functions that scientists don’t even understand sometimes could not find a way to heal itself…ever?

This would be the first of many times that I would be proving science wrong.  You can imagine the confusion and surprise when the several neurologists I was seeing received my second set of MRI slides six months after the first.  Each of them sort of just turned their heads to the side while staring at the images as if from a different angle the original lesion would suddenly become visible.  Apparently some of them had never seen the brain repair lesions before.  (By the way, I still had lesions on the second MRI but they were mostly new ones and some of the previous ones had disappeared.)  I remember thinking “HELLO!  Someone needs to study this and figure out how to mimic this!”  What do you think researchers are focusing on today?  🙂

I happily offered up my MRIs at the ripe age of thirteen but on the condition that my name would not be included in anything.  No studies were published based on my one set of MRI slides, BUT they certainly inspired plenty of other published studies. 

My other initial introduction to the idea of being a subject was when it came to selecting treatment.  There were three drugs available for someone with MS when I was diagnosed and none of them had ever been tested on a minor.  It certainly felt very unsafe to be one of the first to “take the plunge” so to speak.  I declined participating in research because I felt like I was taking enough of a risk already.  I remember my parents and I feeling completely against the idea of me being a “guinea pig.”

It is important that I share these initial impressions because there are different ways to participate in research!  In the first opportunity I didn’t have to do much to make a large impact.  In the second, I was taking some big risks by experimenting with my own body and hoping the MS drug I chose wouldn’t hurt me.

No matter what type of research you are considering, I think of the following three things every single time!

Three Reasons I Participate In Research

          1. FOR THE SAKE OF OTHERS

I know many people can relate to the frustration of receiving a diagnosis and not having treatment options.  I don’t want anyone to have to feel the way I did.  My only options at the time were injectable medications.  The first time I cried was not during my diagnosis process, but afterward, when I found out I would have to give myself shots.  I want other people to have options!

More importantly, if by participating in research we can find a cure, then others won’t even have to experience that initial symptom.  If I can save this struggle for someone else – it’s worth it!  It doesn’t bother me that I’ve already had to suffer and that other people might be spared.  I WANT to spare them!  And by the way, when I participate in research focusing on MS, sometimes that can benefit people with other illnesses too.  I already have to face this illness every day.  I am already dealing with all the challenges, so why not put it to some good for someone else?  Even if there is a .009% chance it will prove useful – in my opinion, it’s worth it!

          2.  FOR MY CHILDREN

The National MS Society estimates that the average person in the US has a 1 in 750 chance of getting MS.  Population studies indicate that the risk jumps to 1 in 40 for those who have a parent or sibling with MS.  This is an enormous increase in risk.  I pray every day that this statistic will not impact my own family.  I can do more than pray though, I can actively work toward this hope by participating in research.  The more researchers understand about my MS and your MS, the better chance they have of making sure our children will never face this illness.  I don’t have children yet, but knowing how badly my parents wish they could take this disease on instead of me…that’s all I need to know.  My parents would trade places with me if they could, and I know several other parents of children with illnesses who have expressed the same feeling.

I have my entire life ahead of me!  I want better treatment for myself so that I can be present and energetic for my children by functioning at optimum health.  I want more advancements towards a cure and prevention so that my children will not ever experience this illness first hand, G-d forbid.  From where I’m sitting, becoming a research subject is a WIN-WIN when it comes to my family.

          3. I’M SELFISH!!!

So far in my life I have a tendency to beat the odds.  My brain repairing lesions is just one example.  No one has ever convincingly told me that they think MS will be cured in my lifetime…but I don’t need a scientist to be convinced.  If there is a chance that I can experience the cure in my lifetime, or much better treatments, I want to do my part to make that happen.  I have every intention of being here when the cure comes!

So yes, be fully informed and take every study as an individual decision.  Weigh the pros and cons carefully.  Weigh the risks to yourself.  Weigh the benefits to yourself.  And my two cents is to also weigh the benefits to others and to your loved ones.