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Local charity turns spotlight on 'devastating' chronic diseases

'It’s just incredible what it does to your life ... it's very devastating,' says woman on International Awareness Day for Chronic Immunological and Neurological diseases
2022-05-12-Alison Rae
Alison Rae, founder of Action CIND, suffers from fibromyalgia and myalgic encephalomyelitis, and is working to break down stigma, raise awareness, and generate funds for research on chronic immunological and neurological diseases.

A locally-founded charity is looking to spread awareness about chronic immunological and neurological (CIND) diseases.

Including such conditions as fibromyalgia, myalgic encephalomyelitis, multiple chemical sensitivity, and chronic fatigue syndrome, Action CIND – founded by Ramara resident Alison Rae – is donating its proceeds to two research facilities working on understanding these immunological and neurological diseases better, including the Open Medicine Foundation.

The month of May is Action CIND’s awareness month, and today (May 12) marks the International Awareness Day for Chronic Immunological and Neurological diseases.

In an interview with OrilliaMatters, Rae said that people suffering from CIND face barriers to treatment, stressing there is a need to raise awareness about these diseases to encourage research and reduce negative stigma.

“It’s very difficult to get diagnosed,” said Rae, who suffers from fibromyalgia and myalgic encephalomyelitis. “It’s diagnosis of exclusion, basically. They test you for everything that you could possibly have wrong, given the symptoms.”

The symptoms of CIND diseases vary, but can include extreme fatigue, sleep dysfunction, muscle pain, extreme sensitivities to a variety of chemicals, and a host of other symptoms that are generally invisible to others.

Rae said that people with CIND look “like healthy, normal people,” and that the diseases’ invisibility – paired with the exhaustion and pain they can bring – leaves victims facing scrutiny from family and friends.

“It’s just incredible what it does to your life. You have to start all over, your friends and family (might not) support you, marriages fall apart, and it's very devastating to people,” Rae said. “They don't have their support network to help them, they’re sick as a dog, and they desperately need a good support network.”

“If you go out, you make the effort to look better, but it's when you come home–no one sees your life when you come home and sees how crippling and disabling it is,” Rae said. 

Rae said that a part of Action CIND’s work is to raise awareness about the diseases, as many don’t know much about them and their symptoms can be severe enough to prevent victims from working. 

“We need the general public support, and we need them to donate to research,” she said. When you look at the money spent on research, and it's (very low), compared to other illnesses, trying to raise funds is incredibly hard because people just don't know what it is.” 

“Many of the patients can't work, so they live on disability, which is below the poverty line, and they are choosing between medicines to help relieve their symptoms, food, and rent, and they don't have enough to pay for them all.”

More about Action CIND may be found here.


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Greg McGrath-Goudie

About the Author: Greg McGrath-Goudie

Greg has been with Village Media since 2021, where he has worked as an LJI reporter for CollingwoodToday, and now as a city hall/general assignment reporter for OrilliaMatters
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