Commentary, Opinion

Tottenham mom raises awareness ahead of Rare Disease Day

February 27, 2020   ·   0 Comments

By Brock Weir

This Saturday is February 29 – a rare day in our calendar that only comes around in the Leap Year.

But, it is more than just a quirk of our calendar – it is also Rare Disease Day and Tottenham mom Sasha Haughian, a mom of three with two sons living with cystic fibrosis, is stepping up to help make an impact.

“For any rare disease, there are no resources,” says Sasha. “We have to go straight to Sick Kids if we want help and we pretty much can’t take our kids to a family doctor if it is anything to do with cystic fibrosis.”

Although considered a rare disease, cystic fibrosis is the most common fatal genetic disease affecting Canadian kids and young adults, according to Cystic Fibrosis Canada. Currently a disease without a cure, it primarily affects the digestive system and lungs. The severity of the disease varies from person to person, but there are commonalities faced by families travelling this particular path.

“The every day experience changes your life, just the fact your children require probably two to four hours a day of physical therapy to help them breathe, which includes chest physiotherapy I have to sometimes do manually like pound on their chest to break up the mucous the disease causes inside the lungs,” says Sasha. “All this stuff adds up to hours throughout the day and dealing with young children, getting them to listen to their parents, I know it can be hard to get children to listen, let alone when you’re trying to get them to do these really important life-saving treatments and there is basically no room for error.”

Ms. Haughian has been a tireless advocate for increasing awareness of rare diseases in recent years.

Her story has been highlighted at Queen’s Park by MPP Jim Wilson, who has been pushing both the present and previous Provincial governments for improved access to medicines. As cystic fibrosis is considered a rare disease, as a consequence drugs that help patients are not produced in great quantities and the cost of treatment is “a bit higher.”

“That has probably been my biggest challenge, getting my kids the proper medication they need to treat their disease,” she says.

Awareness amongst the general public is a further significant challenge.

This problem was clear from the outset as her eldest son went four years without a proper diagnosis, with some doctors attributing his symptoms to the much more common asthma.

“He lived for four years with cystic fibrosis without it being treated, which had huge detrimental effects on his health,” she says. “He had lung damage and that never goes away. I want to get the community to talk about it and be aware of it. It’s your friends, teachers, and doctors. You have to really communicate and keep on top of it, but it is hard. You just constantly find yourself advocating for your kids and just for them to be healthy.

“It’s like the peanut thing – schools are so aware of peanut allergies you’re not allowed to bring peanuts to school because it is a more common, more talked about thing. I feel those families are more supported with their special needs, but when nothing is talked about nothing is addressed and if nothing is known about the disease, something as simple as a kid coming to school with a cold – which we know happens all the time – is really detrimental for my child’s health, but that gets completely overlooked.”

Considering the path her family has followed since diagnosis, Ms. Haughian says one of the biggest advancements in the field has been the growth of the Internet and social media simply for its power to bring people together.

“I know people always say not to Google things, but the groups that the parent support groups that we have been able to develop over the internet, whether it is just a Facebook group or, the parents can talk immediately, they can ask a question, post a question, and you are going to get answers right away with real experiences from other people in the same situation,” she says.

In five years’ time, Sasha adds she hopes effective medications are more readily available to treat rare diseases and policies are in place to address these very real issues.

“I wouldn’t even go as far as policies,” she says, “but really taking what a parent of a rare disease child has to say seriously. It might only be one parent versus the hundreds if it is a more common problem, but that one child’s health is just as important.”

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