Making Nashua aware of World Rare Disease Day this year was an advocate named Mindy with Decrum’s Disease. She toured her home town this year to share with news stations, radio stations, and even local shops and companies on how their support could impact patients like her.
It’s International Rare Disease Day, dedicated to bringing awareness worldwide for the one in 10 people affected by uncommon illness.
It’s not something you celebrate. But after going through what she has, Mindy Willert of Nashua is doing just that. Even becoming grateful.
“That is the most difficult thing I’ve ever done, to be thankful for my pain, my tumors, depression, my dreams being shattered,” Willert said.
When she was 39, Mindy’s life drastically took a turn. She was diagnosed with Dercum’s disease and given five years to live.
“It affects every system of my body.”
Mindy’s weight fluctuates, and she’s gained 100 pounds in the past.
She deals with constant pain and tumors that if removed, would only multiply.
“My fluid and gaining weight can change in a matter of hours and I can feel the tumors grow,” Willert said.
What hurts even more, Dercum’s is a genetic disease which she has passed on to her children.
“I feel guilty every day that I’ve given this gene to my children. It’s really hard to see them suffer.”
While struggling with these challenges every day, Mindy forces herself to look in the mirror, even when it’s tough.
“People think you’re fat and lazy by your appearance,” Willert said.
Which is why she wants to turn her mess into a message. Mindy started the Midwest Rare Disease Day Symposium, where anyone can shop through vendors and help those battling a rare disease.
“No one should feel judged and we all should help each other.”
Because alone the disease may be rare, but together Mindy wants to celebrate and stand strong. Mindy has also started Dragonfly Advocacy to help fund research and bring life-saving tools to the Midwest.
The symposium continues tomorrow at the Dakota Magic Casino in Hankinson.
To read Mindy’s full story and hear about her advocacy work you can visit her online at www.DragonflyAdvocacy.org.