November 1, 2019

Living with a Rare Disease: 43 & Dying.


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Patti is a happy wife and mother of three.

Patti is also dying. Strapped with a rare case of End-Stage Hidradenitis Suppurativa, an autoimmune disease, she has been chronically ill for most of her life. After surviving three bouts of sepsis, Patti’s doctors told her the next will likely be the last. Patti runs a country-wide support group with those suffering from the rare disease, and hopes to dedicate what could be her final days left to bring it the awareness it deserves.

Tune in below to learn more about her condition, and how you can help support those who suffer from it.

“Having this disease has changed my life in ways I never thought possible,” Patti says. And the way I’m living now is not at all what I dreamed about growing up. I am characterized by this disease. I feel like this is all I am. And I have nothing else about me except that I’m the girl who’s sick.”

“We are often blind to all that goes on around us. We don’t realize what people go through if it’s not something we can physically see. This can be said for so many different aspects in life. In this case, Patti has impacted my life in more than one way. Educating me on the disease Hidradenitis Suppurativa has allowed me to understand those who suffer from this better, as well as understand the strength it takes to live with this. Patti is a fighter, and it is admiring how every day she fights to stay alive.” ~ Becky Hayter



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