| Dr Blumenthal’s Introduction ofSenator Patty Murray (D-WA)

Senator Patty Murray is a woman who refused to believe itwhen someone told her that she couldn’t make a difference because she was "justa mom in tennis shoes." She went on to be elected to the United States Senate in1992, and as a member of the powerful Senate Appropriations Committee, she has been makinga difference by ensuring that the health and welfare of all Americans – especiallywomen – are protected. With support for programs that improve women’s healthsuch as women’s health research, and HIV outreach and prevention for women at risk,Senator Murray has shown time and again her commitment to women and women’s health.With great appreciation for your outstanding leadership, your dedication, and your fightto improve the lives of women, we are grateful to you, Senator Patty Murray. 

Senator Patty Murray(D-WA)

It is indeed my honor to be here today with all of thewonderful speakers. I want to particularly thank the National Multiple Sclerosis Societyand the Office on Women’s Health in the Department of Health and Human Services forhaving this conference today and bringing together so many experts and so many advocatesfor people with autoimmune diseases.

Of course, as we have all heard, the majority of thesepeople who have these devastating diseases are women. And I especially appreciate yourtheme of unlocking the mysteries of autoimmune disease in women. Under the topic *HealthyWomen 2000*, the initiative has now examined women’s health from so many differentaspects. This approach, I believe, really leads to a well rounded view of these struggleswomen deal with. We will have to explore how autoimmune diseases disproportionately affectwomen, and we have to come up with better strategies to help women live full lives whenthey face these disorders.

I’m here this morning to talk about a different sideof these diseases because we also have to look at the challenges that these conditions puton family members, whether it is their daughters or their sons or their mothers or theirsisters or their brothers. I know, because I’ve been there. As some of you may know,my father has multiple sclerosis and I can personally tell everyone of you that thisdisease impacts the entire family, not just the person who has been diagnosed with thedisease. The people who care for those who have MS and other autoimmune diseases are usedto giving. In addition to increasing our research, I think it is absolutely critical thatwe find ways to recognize and support the care givers who are taking care of these peopleevery single day.

I hope this morning that by sharing a bit of my story withyou, we can help focus this country on the often overlooked people – the children andthe families of those with autoimmune disease. I remember so well the days when I was ayoung teenager – and I have to tell you that I have spoken hundreds of times in mylife as a United States Senator, but it is the most difficult for me to talk about thispersonal part of my life. I remember so well those days then I was 12 and 13 and my fatherwould stumble and fall, and another adult would look at him and say, "Oh, he’sdrunk." I knew he wasn’t drunk, but I didn’t know until I was 15 that hehad multiple sclerosis. I can’t tell you how that felt as a young teenager, and Ican’t tell you about how that built up in me as an adolescent, a vacuum ofinformation, that I wouldn’t wish on anybody growing up today, My parents, like somany from their generation, were extremely proud people. When they found out what waswrong with dad when he was finally correctly diagnosed, we didn’t talk about it.I’m sure that happens in so many other families. We were like a family afflicted withalcoholism or some other social stigma. None of us talked about my dad’s disease. Mymom didn’t discuss it. As kids we were not allowed to ask about it. We were justsupposed to help my dad and stay silent. 

As we helped my dad, things in my family began to change.As the disease took control of his life, it took control of my family as well. I saw mymother, who is an energetic, inspirational, dynamic person, wear down. She had to spendmore and more of her time taking care of my dad, helping him go to the bathroom, feedinghim, getting him in and out of bed, trying to get him in and out of the car so that theycould go places which, eventually over time, they just quit doing because it was too hard,and they both became more and more housebound over the years. My mom spent more and moreof her life as I grew up being a 24 hour care giver. I watched multiple sclerosis rob myfather of his vitality, and then I watched it rob the rest of the family as well. Itrobbed something from my mother, and it took something from each one of us kids as well.It was, of course, toughest on my mother. After my dad had to quit work when I was in highschool, my mom returned to school so that she could go to work and continue to raise allof us 7 kids who were still at home. Amazingly, my mother encouraged every one of us to goon to college. Despite all the odds, and I’m very proud to tell you today, despiteall the difficult times in our life, everyone of my parents’ 7 kids have finishedcollege. 

But during that tough time, someone always had to be withmy dad. Like most MS patients, and frankly most people with autoimmune diseases, he neededconstant attention which increased and increased over the years. Consequently, mymom’s experience in school and at her new job as an accountant wasn’t what itcould have been for her. I often wonder what life would have been like in our family ifthings had been normal like all the other people I saw. But like most families who livewith autoimmune diseases, we didn’t talk about the time or the energy or theattention that it took to care for Dad, because none of us—especially mymother—ever wanted him to think he was a burden to us. He had enough to endure, so weremained silent, and my family did not ask for help. My mother has been a care giver for25 years with just the help of her children because she has had very little else to relyon. She did not have respite care. The one or two times that I remember she did, therewere so many forms to fill out that it really wasn’t even worth it. It was not easyin the early years especially to get information about MS and what was happening to mydad. And we watched in silence.

A few years ago, my mother was struck with her ownautoimmune disease, severe rheumatoid arthritis; she now has heart problems. Whenever shehad to go to the hospital, the question was not only how do we take care of my mother, butwho is going to take care of my dad. We didn’t know, as I was growing up, whatautoimmune disease meant, much less multiple sclerosis. We didn’t even know thatthere were other families sharing the experiences that we had. We did not know where tolook for suggestions. We didn’t know where to look for help. No one told us it’sokay to talk about it. My dad never got the benefit of the research, even though we livedvery close to the University of Washington, which is a wonderful teaching school in thestate of Washington. Again, my family grew up operating, with some respects, as if thiswasn’t happening. My parents just didn’t go outside our family to ask for help.To me, the silence that is associated with diseases like MS is one of the toughestchallenges that families face. I have to tell you that even today, as I share my storywith you, part of me worries that my parents will hear about what I’ve said to youand worry that, "Oh, my gosh, I’ve been a burden to her." I worry then thatthe next time they need me, they won’t want to call because they don’t want metalking about it, and they don’t want their neighbors and their friends and otherrelatives to think that they are a burden on their children. This is why we stay silent,because we don’t want to give them that burden. We want them to call.

I know that by addressing the needs of care givers, inaddition to the work on the diseases themselves, that we can really relieve a lot offamilies in this country of the guilt and worries that these diseases bring to thefamilies. I know that my parents feel very strongly that their lives have been really richand rewarding despite the struggles that they’ve lived through. I hope that bylearning from their experience and my experience that we can continue to do a much betterjob for the countless children and families who will go through this in the future.

Today, I also want to tell you that when we look at awomen’s life in 2001 or 2025, we look past that woman and see her child standing inthe doorway. Much of my life has been as a passionate advocate for children and whatthey’re going through in the world today. I’ve been a preschool teacher, aparent education instructor, a school board member, a state legislator, and here beforeyou today a United States Senator, and in every one of those roles I’ve been workingfor young children. And as I have watched what’s happened to them in this country, Ithink back to my family of 9, and how much support we had for each other, and how manyyoung people out there today don’t have that kind of support in their own families.

I have just recently written my own commitment to youngchildren in this country with a mixture of strategies and legislation that I intend tocarry out as a United States Senator to make life better for young people today. I hopethat all of you will join me in that pursuit as well. But the part of it that I want totell you about today is on children’s health, because I want to work to preserve thesafety that we have in place, to do better research, and make it possible for young kidsto be healthier today. I’m working on a preventive health bill and community effortsso that we can get good health information into the hands of parents. I know a lot of youhere are working on complementary efforts and I encourage you to work with me as you dothat. Children may have these disorders themselves, or they may have a parent or otherfamily member who is affected, and we have a responsibility as adults to help those youngpeople in our country today.

It really troubles me that so many of these disordersaffect women, and it troubles me as well that so many of those who are care givers in thiscountry are also women; thus women are double impacted by the effects of these diseases.As we do research, there will be good news in the future for MS, and good news for peoplewith other autoimmune disorders. I wanted to come this morning and share my own story withyou so that as we do the research and as we look at ways to inform women, we remember thefamilies, the brothers, the sisters, the young children, the parents, who are the caregivers of these people. We must remember to do everything we can to break the silence inso many families across this country.

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