Seeking a Better Understanding of My Rare Disease

Seeking a Better Understanding of My Rare Disease

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Seeking a Better Understanding of My Rare Disease

I am an advocate for my rare disease, but I still can’t describe it. Several weeks ago, I went to the dentist with my husband. It was a hot and humid day, as it always is here in Texas. I was carrying “Cooper,” the name I gave to my portable oxygen machine, and I could tell the dentist wanted to ask me about it. I made a joke to sate his curiosity. “This old thing?…

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