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Former Great Falls woman continues to raise awareness for rare diseases

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GREAT FALLS — February is Rare Disease Awareness Month, and Tuesday is Rare Disease Awareness Day - a very important occasion for former Montana resident Corinna Dahlin. Her life has been like a rollercoaster in the past year.

Not only did the Montana native move across the country to Maryland when her husband took a job with the National Guard Bureau, she continues to raise awareness for rare diseases, including one she’s struggles with for over a decade, polycystic liver disease.

“It grows big cysts on your liver, it grows little cysts on your liver, sometimes it bugs another organ sometimes it doesn’t,” said Dahlin. “In my case I had to have the left lobe of my liver removed because it was imposing on my stomach, and I could only eat a couple bites of food.”

Corinna says it also made breathing difficult. In severe cases, a liver transplant is an option.

Last February, she told MTN one of the most frustrating aspects of the often-misunderstood disease was finding doctors who took her illness seriously.

“I can’t even express enough the importance of people in health care showing just one ounce of compassion,” said Dahlin.

Corinna Dahlin.jpg

The 46-year-old mother of three uses social media and a website to tell the story of her company Chronic and has even launched a clothing line.

“It’s basically a really comfortable fabric that’s super sustainable, flexible, your body can change shape in it and you won’t be less comfortable,” said Dahlin.

The first line of clothing is called the Davis Collection, in honor of Corinna’s nephew Tyler Davis. Last year he thought the pain he felt was a brain tumor. Much like Corinna, he pleaded with medical professionals to listen.

“He got diagnosed with a rare form of depression,” said Dahlin. “They proceeded to treat him for depression aggressively for the remainder of his life. And why I say that is because October 19th he died of a brain tumor.”

In October, with the help of a childhood friend turned world class dog breeder and trainer, she gifted a service dog to a Missoula area child suffering from a rare disease.

She also teamed up with a Johns Hopkins medical student through a program called Global Genes that helps future doctors learn more about rare diseases.

With the help of the Global Liver Institute, she met with leaders to ask for backing on legislation pertaining to liver disease.

And she still wants to bring ‘Chronic’ to the table, hoping to collaborate on healthy meals for people with liver disease.

While her journey has been met with ups and downs, the Navy veteran is intent on making a difference.

“I’m just going to keep plugging away at it,” said Dahlin. “I’ve done a lot this last year and I feel like I’m moving along at a snail’s pace but then sometimes I look back and I go, ‘OK, you did everything you set out to do and maybe a little bit more so give yourself a break.”

Questions or comments about this article? Click here to contact Tim.


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