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Canadian organization MiaThrives looks to spread awareness about living with rare skin condition

February 28 is Rare Disease Day which raises awareness about those living with a rare disease

About 400-million people worldwide are affected by a rare disease. Despite this fact, many rare diseases go undiagnosed and as a result in many cases no cures are available. Much like those living with Epidermolysis Bullosa, also known as, EB.

EB is a rare, painful genetic skin disease that makes flesh extremely fragile, it can open and blister at the slightest touch. This is why people with EB are often referred to as butterfly people—their skin can be compared to that of a butterfly's wings.

That's where MiaThrives comes in. The organization was created and founded by Melissa Vassallo Idiens and named after her daughter, Amelia.

Emily Boros-Rausch is the creative director of MiaThrives, she also has EB and explains,

"Very rarely there's a genetic mutation and a child is born with EB. That only happens about 2 in a million. I have EB mine was a genetic mutation, so no one in my family has it, but once you have EB, you have a higher chance of passing along if you have children. For example, Melissa, the founder has EB, her grandfather had EB, and her daughter Mia also has EB," Boros-Rausch said.

As a result, the organization was created in her daughter's honour so that other children or adults living with the skin condition could have a community to find resources, and other individuals living and thriving with the same disease.

"EB cannot only affect you physically but it can also affect you mentally, living with a rare disease and feeling isolated and alone. MiaThrives is really pushing to make sure people have the resources they need to thrive with EB," Boros-Rausch said.

Amid the global pandemic, life for those with a rare disease has proven difficult, Boros-Rausch says COVID-19 can cause a lot of extra stress for the EB community as many appointments with specialists are switched to Facetime.

"People with EB, their bodies are always working in over-drive to heal open wounds, blisters, fighting infections. COVID can be particularly scary to try to avoid. I find a lot of the community is being stricter about staying at home and being extra careful but then also feeling extra isolated."

She says right now, the organization is working to release more content, that way they can still be together virtually.

MiaThrives provides weekly EB hacks featuring tips and tricks, children's books, and a weekly podcast that hosts EB thrivers across Canada and worldwide.

In honour of rare disease day on February 28th, the organization is releasing season 3 of their weekly podcast featuring television host, Liz Trinnear, who is also an EB thriver.

For more information about EB, to access resources, and to find where to donate, visit their website. 

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