Letter from Mother of MS Patient

As regular readers of Brass and Ivory know, many who comment and the many more who do not, I am straight-forward and sometimes brutally honest about the information and ideas I encounter. I do not enjoy being manipulated, nor do I relish a good argument for argument's sake alone.

I really am the shy, quiet type in real life, albeit confident in my area of expertise. As someone who passed the Calculus AP (B/C) test in high school without ever sitting in on the class (story for another time) and passed with a very high score (enough to fulfill all college math requirements), I am a quick study - smart and logical. That's just me.

Recently, I wrote about a drug company, a public relations company, a pharmaceutical promotions campaign, a Newsweek article, and an MS patient with connections to each. The patient, Gregory Roehrich, was brave enough to lend his story and his face to the cause of MS Awareness.

March is designated National MS Education & Awareness Month, by the Multiple Sclerosis Foundation. March is the month which The Montel Williams MS Foundation is holding it's big Gala fundraiser honoring Billy Tauzin, CEO of PhRMA (Pharmaceutical Research and Manufacturers of America.) And March 10-17, 2008 is MS Awareness Week for the National MS Society.

Do not be surprised if persons with MS are present through various media sources during this time. I point you to our friend Mandy who asks some basic questions regarding what exactly we want people to know about MS and more importantly living with MS.

Now I share with you an email that Gregory's mother sent to me today which she offered to share with you. She has some concerns over the discussion which ensued after I wrote PR for MS - Ogilvy and Betaseron. I highly recommend that you read the article and the comments first to understand some of the references which Mrs. Roehrich makes.

Some final things which I'd like to say is that I commend Gregory for being pro-active in his choice of managing his MS. It is wonderful that he has not suffered severe disability and I hope that his stability continues for a very long time. Eating well and exercising are excellent ways to protect your body's resources and it's unfortunate that this was not included in the Newsweek article. Drugs alone do not keep us healthy.

Dear Lisa,
I am Gregory Roehrich's mother and felt compelled to write.
I would have responded to the blog but am embarassed to say that I don't have a clue how to set up the account.

I find it very curious that you would spend precious time researching my son's article in an attempt to find something negative to post. As far as his "can do everything" attitude, I hope and pray he never loses that. Having to tell my 19 year old that he as been diagnosed with multiple sclerosis was the hardest thing I ever did in my life. To then sit down and have a conversation about life changing as you know it but "that" life does not have to a negative living with MS was a whole other conversation. My son got that wake up call very early on in life and has made choices in how he wants to live his life based on this diagnosis. He has made the choice to create balance in his life both in his career and in his personal life--something that many of us don't do until we have that mid-life crisis. What he failed to mention in his interview is that not only does he take an interferon, he also eats very well, exercises daily and takes various supplements to complement the interferon. What is so wrong with having his face and attitude linked to the image of MS? What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future? What is so wrong with the PR company in the background promoting a "feel good" campaign? Everyone has the choice to take medication or not--in my son's case, I don't know if it is the Betaseron working, the supplements and lifestyle, a combination of both or maybe none of the above, but I know I would never encourage him to eliminate any of them. I am very proud that my son had the courage to put his face out there knowing that there would definitely be a stigma atttached once people found out he had MS. He has faced that stigma but the overwhelming positive impact he has made on other people's lives has outweighed any of the negative.

Feel free to post my e-mail on your blog.

I responded directly to Mrs. Roehrich and afterwards she still felt comfortable with my posting her email on the blog. And she asks some excellent questions, worthy of reflection.

• What is so wrong with having his face and attitude linked to the image of MS?
• What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future?
• What is so wrong with the PR company in the background promoting a "feel good" campaign?

How would you answer Mrs. Roehrich's questions?