Monday, November 26, 2012

When the Rare Thing Happens

Today I heard the news that Alexandra McHale, the 23-year-old daughter of Houston Rockets coach (and former Celtics player) Kevin McHale, has died due to complications of Lupus.

My heart aches for her family.

I can't help but also think of others who have Lupus and how their hearts probably skipped a beat upon hearing this news. Or of other parents whose children suffer this disease, and the lump of fear that developed in their throats, hearing her age. Or of the children who either have Lupus or have a parent, family member or friend with it, and the questions and fear it will conjure up for them.

Like Crohn's, Lupus is an autoimmune disease in which your immune system mistakenly attacks healthy tissue. With Crohn's Disease, the target of the immune system is the digestive system. But in Lupus, it is often more systemic - attacking any part of the body (I'll be honest - this fact makes me feel fortunate that I "only" have Crohn's). Like other autoimmune diseases, there is a spectrum of symptoms and severity, and there is no known cause or cure. For these diseases, with proper medical treatment, "most people can live a full life."

The death of Alexandra McHale also reminded me of the fairly recent passing of Jennifer Jaff, a legal advocate for the chronically ill who died of complications of Crohn's Disease in September. She was 55.

Jennifer Jaff's passing didn't strike me just because she had Crohn's Disease. It also struck me because I had contacted her in the first year after my diagnosis as I tried to understand the rights and options I had as an employee, and she was very understanding and helpful. It was this interaction and the work she did with so much passion that really underscored her loss.

When you have an illness - regardless of what it is, whether it is acute or chronic - there is some measure of comfort in hearing the words, "death is rare." But when you hear the news that someone has succumbed to the complications of the same disease you're living with, it's a reminder that it can happen. That even though statistically it is rare, you could fall within that margin.

Two talented women unfortunately fell into this "rare occurrence", and are gone long before they should have been. Tonight, I am thinking of them and their families, and hoping that medicine can continue to close the door on the margin that nearly 3 million people walk along.

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