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Amy’s video:

Excerpt from Amy’s Blog…

Let’s talk about “suffering.” I have heard that word used in news, media, and interviews to describe people like me. I have the rare disease XP/TTD Complex. My bones break easily. I have to stay indoors most of the time. I see a lot of doctors and have a lot of tests. But, I am living with a rare disease – not suffering from a rare disease.

When I think about the word “suffering,” I think it sounds hopeless. Sometimes having a rare disease can be a struggle. But, only I know if I am suffering. So, it feels strange to hear other people say, “She is suffering from XP/TTD.”

Here are some words to try instead: Living with a rare disease, or coping with a rare disease. These words are more positive and highlight a person’s strengths. You could even say someone has a rare disease. Better yet, let them describe what their own experience is instead of trying to describe it yourself. You might find that listening changes your perspective!