Today I’m speaking at the United Nations on autoimmune disease. Why, yes, you are correct, I am just an actress—but I have much to contribute to the discussion of autoimmunity.
In July 1998, I lost my sister, Heather, to lupus. It came out of nowhere (or so we thought) and was undiagnosed to the point that Heather had no more fight left. Everyday since then has been a struggle to reconcile what happened to my sister. There’s no easy answer, and there are a ton of tears.
I haven’t had to tell the story of what happened to my sister for a few years now, and it surprises me how raw my emotions seem today. Like a bruise, when you press it, it hurts. I’ve been the spokesperson for AARDA (American Autoimmune Related Diseases Association) for over 10 years, a position I’m proud to have. But my job is basically public awareness: telling people who have never heard of autoimmune diseases what they are and why we need to pay attention to them. This, of course, consists of me telling my family’s very private story, and in the end, it is a bittersweet burden.
My sister would hate to have me talking about her to news outlets, and, yes, even to the United Nations. But for those of you out there who have never heard of lupus, scleroderma or Crohn’s diease, I know she won’t mind. If my family had known about lupus and its symptoms, we might have Heather with us today.
I have another reason for working with AARDA: my three year old daughter, Maggie. If my sister’s experience can teach me anything, it’s to be on the lookout for these autoimmune diseases because they are a major women’s health issue. As many as 50 million Americans have autoimmune diseases, and 75% of those are women. And autoimmune diseases tend to cluster in families, which is a loose way of saying they’re genetic. It’s not one gene that gets passed down but several genes that increase risk of developing an autoimmune disease. My husband and I are not alarmists when it comes to Maggie’s health, but we are very attentive observers.
My “Mama Mojo” blog is much about the physical and emotional health of kids. Now you know why this is so important to me.
If you want to learn more, please visit AARDA.org.