Despite all of the research into ALS it remains a difficult disease to diagnose. An organization called Everything ALS is working to change that. Indu Navar created the organization after her husband’s battle with ALS, also known as Lou Gehrig's disease.
While reflecting on the process that her family endured while her husband battled the disease, Navar says, "There is something called diagnosis fatigue. And it really creates a lot of very, very deep, deep sorrow and grief just going through the diagnosis because it is, I say, it's death by a thousand cuts."
She continues, "It's just in the unknown. And then you know, your timing's running out because you could see that your loved one is actually suffering and going through this process of, you know, 'Ohh today, I can't lift my hand. My finger doesn't work. Oh, I can't tie my loose, my lace anymore, or I can't put on the shirt anymore.'"
The current way ALS is diagnosed is through a process of elimination. There's no test to really diagnose the disease, Navar says. This results in patients spending time getting diagnosed, rather than getting treated.
Navar's organization is seeking to change this through technology innovations. "There's a lot of data in how we move, how we balance, how we walk, how we breathe, how we speaker and how our facial structure changes. ... So that's what we do, we actually study that," she explains.
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