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Spokane man living with rare genetic disease finds hope in new treatments

SPOKANE, Wash. - A Spokane grandfather was nearly ready to give up any plans of having the life he dreamed of when a rare disease wreaked havoc on his body. 

Now, he's finding new hope for himself and his family, in innovative treatments. 

As Chuck and Sharell Horwath near their 50-year-anniversary, they can look back on years of travel, parenting, and success. Those years also include pain and hardship. 

A few years ago, Chuck Horwath started having issues with his body. He had severe pain, diarrhea, nausea, and issues with coordination, among other things. 

"As they came on, I denied it and figured it was old age, but it came to a point where you can't deny it," Chuck Horwath said. 

Eventually, he went to the doctor. That's when he was diagnosed with hereditary amyloidosis (hATTR). 

Chuck Horwath wasn't surprised. 

That's because the same disease was killing his mother. At the time, he and his wife were caring for her. 

There is no cure. 

"It was devastating. We saw what the rest of his family had gone through," Sharell Horwath said. 

It was a painful process as the disease destroyed their lives and bodies. 

The disease is passed down through families, impacting the liver, nerves, heart and kidneys. Advocacy websites explained that abnormal protein deposits in organs where it shouldn't be, damaging the body. 

Symptoms are extensive and can range from vision changes, numbness, pain, stomach issues, weakness, and much more. 

"I felt like I was dying of the worst flu you could ever imagine," Chuck Horwath said. 

Chuck Horwath eventually lost his mother, his sister and his uncle to the disease. He worried when it would take him and how it would impact two of his sons who also carry the gene. 

When he had nearly lost hope, he found out about some new treatments and medical research progress. 

Last summer, the FDA approved two new treatments for the disease. While it's not a cure, it helps people, like Chuck Horwath, manage the symptoms and live a more normal life. There are an estimated 50,000 people with the disease across the globe. 

"As time went on, I really felt like now I'm in control. The disease isn't in control of my body," Chuck Horwath said. "Some call that a hallelujah moment."

His quality of life is infinitely better than it was a few years ago. He's back to doing the things he loves with his family. 

This couple is determined to raise awareness about this disease now and how genetic testing may lead to early diagnosis. 

"Stick with it and figure it out and if one doctor can't figure out what it is, go to another," Sharell Horwath said. 


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