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Friday, January 22, 2010

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

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