With one in every 2,500 people — or 2.8 million worldwide — affected, it’s hard to believe that most of society is in the dark when it comes to knowing about and understanding those suffering from Charcot-Marie-Tooth (CMT) Disease.

Nonetheless, raising public awareness is one of the biggest hurdles for people living with CMT, like Trumbull resident Doug Sutherland.

That’s why Sutherland is hosting an event titled “Charcot-Marie-Tooth: The Most Common Inherited Neurological Disease You’ve Never Heard Of!” at the Trumbull Library Community Room from 6:45 to 8:30 p.m. Wednesday, Sept. 23.

“It’s not a muscle disease, it’s a degenerative nerve disease,” explained Sutherland, who first found out he had CMT in his mid 20s. “Over time, there’s muscle atrophy and it becomes a muscle problem or a muscle disorder…

“For me, it started with my feet and I had problems walking so I had to begin wearing braces on both legs to keep from tripping, but several years after being diagnosed, it went up to my hands and since then my manual dexterity is very limited and I need to use a special pair of pliers to grab things,” he said. “It’s a progressive disease so whoever has it gets worse over time — you’re constantly weakening.

“I’ve plateaued in severity over the last couple of years but it will get worse and I will have to be in a wheelchair or move around in a scooter eventually.”

As part of CMT Awareness Month, which lasts throughout September, the library program will feature a screening of the documentary Bernadette about thirty-something Bernadette Scarduzio, who suffers from CMT.

Filmmaker Josh Taub documents the physical decline of a young woman in her prime during the course of the film, tracking Scarduzio’s active and athletic lifestyle to her dependence on a scooter and assisted living.

When her father, who shared the disease, suddenly passes away, the protagonist resolves to raise herself from suffering in obscurity to become the “face of CMT.”

For Scarduzio, the nerve disorder was rapid in its progression — other times, as with Sutherland, it’s slow.

“She has it a lot worse than I do, and hopefully her story can provide some insight to people who don’t know about it,” Sutherland said.

“It’s highly variable from individual to individual,” he added. “That’s why it’s not as visible as MS (multiple sclerosis), but there’s more people with CMT than MS — it doesn’t necessarily affect the length of life, but it’s equally, if not more, vicious in what it can do and how quickly it can act…

“You constantly have to adapt how you live,” he added. “I’m a software programmer so I had to change the way I typed when it began affecting my hands.”

A new coping strategy

Sutherland believes that CMT’s visibility and awareness is low because many of those who suffer from it are embarrassed to go public about living with the disease.

For example, he said that there are 1,400 people in Connecticut with CMT, and yet only 60 people are signed up on the mailing lists of the state’s two support groups — one based in Hartford and another, a southern Connecticut chapter, which Sutherland champions.

“It’s interesting because it is a disease you can hide, and some people do that to cope with the fact they’re living with something this serious — they want to pretend that they don’t have a disease,” the Trumbull resident said. “That hurts us, though, because we need everyone to be involved in raising awareness...

“Nobody should be embarrassed about it,” he added.

Good progress

Gov. Dannel Malloy recognized September as CMT Awareness month for the third straight year on Sept. 9, and Sutherland was in attendance to shake the hand of the state’s top leader.

“He’s always been very helpful; very willing to get the word out there — to get people’s attention,” Sutherland said.

Part of that signed proclamation were two key points that have Sutherland feeling optimistic — “the mission of the Charcot-Marie-Tooth Association (CMTA) is to support the development of new drugs to treat the disease, to improve the quality of life for the people living with the disease, and, ultimately, finding a cure to CMT and achieve a “World Without CMT.”

The governor also stressed in his official statement that the CMTA’s Strategy to Accelerate Research (STAR) Initiative is making great strides toward developing therapies for CMT through an innovative public and private partnership combining the National Institutes of Health, universities, and laboratories around the world to identify candidate drugs with potential to begin human trials for the treatment of the disease.

“Previously, all we had was support groups to help those suffering with the disease — we didn’t have the goal of reaching for any medical solution,” Sutherland explained. “But in the last five to 10 years, groups have pulled together to look for different treatment methods to slow down or possible reverse the disease.

“It could be coming in the next five years,” he added. “There’s a lot of hope.”

New traditions

With a tangible, medical solution in sight, those support group members like Sutherland have began to seek out establishing new traditions that will help raise funds for the possible cure.

That’s why last Sunday, Sept. 13, the Southern Connecticut CMTA support group organized and hosted a Cycle/Walk/Run for CMT awareness at Brooksvale Park in Hamden.

Sutherland said about 45 people were in attendance, and $6,000 was collected.

The group has hosted other fund-raisers over the years but believes his event can become an annual one.

“I’m a firm believer in doing something the first time and learning from it,” Sutherland said. “I think we’ve picked this and we’re going to stick with it, and hopefully get better every year.

“We’re not too sure where or when the next one is going to be but we’re going to begin planning this fall,” he added.

For information about the upcoming event, call the library at 203-452-5197.

For more information about CMT, go to www.cmtausa.org.

The link to donate to the CMTA is:

http://www.firstgiving.com/fundraiser/douglas-sutherland/cyclewalkrun4cmt