Army Veteran Michael Cahall Advocates for Dystonia Awareness

Correct Diagnosis Gives New Lease on Life after Decades without Proper Treatment
 
Dystonia causes excessive, uncontrollable muscle spasms.
Dystonia causes excessive, uncontrollable muscle spasms.
GRAND RAPIDS, Mich. - Nov. 6, 2019 - PRLog -- "I was told 20 years ago that I was terminally ill and had five years to live," says Michael Cahall of Kentwood. "Obviously, they were wrong. I am still alive and enjoying life." Cahall is passionate about promoting awareness of dystonia, the disabling brain disorder with which he was finally diagnosed after 2 decades without treatment. Dystonia affects 250,000 Americans. Every year, Cahall joins other volunteers affiliated with the Dystonia Medical Research Foundation (DMRF) to gather in Washington to educate Congress about dystonia and speak out on patient issues, namely federal research funding through the National Institutes of Health and Department of Defense (DOD). As a military veteran, Cahall is especially passionate about urging legislators to include dystonia as a condition eligible for study through the DOD Peer-Reviewed Medical Research Program. Treatment options for dystonia are limited, so advocating for patient access and affordability are also policy priorities.

"Sadly it's not uncommon for individuals to go years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life," says Janet Hieshetter, Grand Rapids native and President of the DMRF, based in Chicago. "Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and coping support from others who understand the challenges of living with dystonia."

Cahall developed dystonia from a traumatic brain injury sustained while serving in the Army. Individuals affected by dystonia struggle against their own bodies to walk, sit, eat, write, and/or speak. The nervous system is hijacked by chaotic signals that instruct muscles to contract excessively, causing involuntary movements and abnormal postures in the body and limbs. Cahall has undergone four brain surgeries and multiple hand surgeries. He requires quarterly injections of therapeutic botulinum neurotoxin—commonly known by the brand name "Botox"—to see, chew, and breathe.

"I don't want anybody to feel sorry for me," says Cahall, who is a father and grandfather. "The only thing I truly want is the chance to continue to live my life to the fullest, and to give back—especially to help children affected by dystonia."

Dystonia is more common than Huntington's disease, muscular dystrophy, and Lou Gehrig's disease (ALS). There are multiple forms of dystonia that impact people of all ages and backgrounds. The vast majority of cases are not life-threatening. There is not yet a cure. Although treatments exist, there is no therapy that benefits even a majority of patients.

The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. The DMRF can be reached at 800-377-3978, dystonia@dystonia-foundation.org, or https://dystonia-foundation.org

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