PEARLS Project

PEARLS is a safe online blog platform that Positive Exposure created for all of our ambassadors to share life experiences from their unique perspective.

The PEARLS Project is a creative tool for classrooms, professional development, research as well as anyone interested in gaining a deeper understanding and respect for human diversity. Our ambassadors and their families are empowered self-advocates, using their unique voices to foster positive change.

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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!

Excerpt from Amy's Blog

 

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