Deanah Alexander; Texas Multiple Sclerosis Society, Peer Reviewed Medical Research Program Consumer Reviewer

MS is not one of the attention getters when it comes to lots of funding. And so having people who can speak about it and know about it is really important. When I was first diagnosed, I was sure I just had a sinus infection, so it was a shock to be diagnosed with MS. I got into a neurologist very quickly. My diagnosis was arrived at very quickly unlike some experiences of others, so I started treatment very quickly and I—you know—that’s very fortunate for me.

Being a consumer reviewer has been a learning experience to say the least. To read proposals—anywhere from 12 to 14 proposals—and then to evaluate them really stretches one’s brain and to think about—my role is—how might this research impacts consumers, how is it going to impact my friends in the support groups, and the people I know that have MS if this is research is funded?

In the beginning, 2 years ago when I first served, I thought you know I’m actually pretty smart. I have a science background. I can do this. I understand these things. And then I met the scientists and people who are actively involved in research. And for a bit I felt really dumb. I thought I have nothing to contribute.

I heard some other consumers speak up. I—you know—the scientists were all nice and they were warm and they were willing to listen. And they asked good questions and they wanted to know what is it like to live with MS. And so it wasn’t nearly as intimidating. And after I realized that, then you know it’s like the flood gates opened and I could talk to them just like real people. I wasn’t intimidated, and they wanted to hear what I had to say and I wanted to hear what they had to say. How did they evaluate research? And they wanted to know how did I evaluate the impact of that.

You know we’re on the verge of having new and innovative treatments that those are being actively explored and they’re looking at even you know other things that might help us better diagnose multiple sclerosis or perhaps give us, you know, as a family member to give me some information of—are my children at risk. What can I watch for? What can I tell my children about their children to watch for with this disease?

You know I was shocked and I—when I was nominated I thought why does the Department of Defense care about multiple sclerosis? And 2 years ago when I came, the focus was on military health. I had no idea that there’s an increase in veterans with multiple sclerosis until 2 years ago. And you know that was an eye-opener. And you know that—that just led to okay, well then what else is going on. You know that the Department of Defense is much—the Department of Defense, I thought well that’s the Army and the Navy and everybody with guns and things like that. But they actually do so much more; it was pretty exciting.

I have many friends now, new friends since my diagnosis, people who have inspired me, people who have had MS for 20–30 years even and that was really helpful when I was first diagnosed You know to walk into a room to see–I’m in a women’s support group—and to see a bunch of women laughing at their own symptoms and to knowing okay, I’m really not going crazy. This is normal and you can live through it. It’s not me; it’s a disease I have but I’m still me. So that’s been wonderful. You have to be involved. You can't just sit back and let—first of all, you can't—if you have any chronic disease you should never just sit back and let the disease control you. You have to be proactive and you know do whatever you can. If you think you can't do anything give it a shot. I mean everybody can answer a phone, can volunteer some way to help, and it’s everybody working together that makes a difference.