Specialists at SickKids helped Jason understand his rare kidney disease, and how to treat it

Jason Teng, 14

North York

Throughout winter break 4 years in the past, 10-year-old Jason Teng boarded a flight from Toronto to Taiwan, excited to go to his grandma. However by the point he landed, Jason’s legs had swollen up. The swelling and ache intensified over the following two weeks. His grandmother apprehensive it was one thing critical.

As soon as again in Canada, Jason was rushed to his physician, who urged his household to take him to The Hospital for Sick Youngsters (SickKids). Blood exams ensued. Then urine samples. Then got here the dreaded await outcomes. Jason and his household discovered he had nephrotic syndrome, a childhood kidney illness with no identified trigger. Signs embrace swelling within the physique as a consequence of huge protein loss in urine. The illness will be managed with remedy, however sufferers generally undergo relapses.

In Jason’s case, he gained weight — at the same time as he skilled a lack of urge for food — and infrequently felt exhausted. His classmates observed. Some harm him with their merciless remarks. “On the time, I used to be most likely extra embarrassed, so I did not clarify to them what occurred,” Jason remembers.

Steroids assist deal with nephrotic syndrome, however Jason initially discovered the capsules too bitter to maintain down. He’d gag and throw them up. Ultimately, he tossed them within the trash.

“Then it grew to become extra critical,” says Jason’s mother, Claire Teng. Jason returned to SickKids – this time for per week – the place he was warned that with out remedy, he risked life-threatening problems.

“I noticed I didn’t need to die,” Jason says.

Whereas SickKids Baby Life Specialists and Therapeutic Clowns provided Jason alternatives to play video games and be a part of actions, Claire discovered extra about nephrotic syndrome from hospital workers. Researchers invited Jason to hitch a SickKids examine known as INSIGHT, which investigates genetic and environmental components in kids and youth underneath 18 with nephrotic syndrome.

“We steadily understood this illness,” Claire says.

One among Jason’s docs provided invaluable recommendation for protecting the remedy down: Take it with yogurt, as a result of “yogurt is fairly straightforward to swallow and it could assist tone down the bitterness,” Jason remembers. The tactic labored. He additionally started a brand new remedy routine, with weekly blood exams to watch progress.

Now, checkups are right down to as soon as per yr, and Jason is feeling stronger. He’s additionally discovering extra vitality to discover hobbies akin to drumming and hand-customizing white sneakers along with his personal signature prospers of color.

“If I might return in time, I might most likely inform myself that you must push via it to really get higher,” Jason says. “As a result of once I skilled it, I used to be in denial of the docs’ recommendation.”

At SickKids, the Division of Nephrology has been bettering the well being of sufferers like Jason and others with kidney illness. It has a devoted clinic with specialised nurses to look after sufferers with nephrotic syndrome. However nephrotic syndrome continues to be not effectively understood, and households just like the Tengs say extra analysis is essential. To that finish, SickKids is main a examine of greater than 500 kids with nephrotic syndrome from the Better Toronto Space to study extra about illness outcomes and mechanisms.

The Teng household is all in in the case of helping others who discover themselves in an analogous state of affairs. Along with sharing their journey, Jason’s older brother, Ryan, has created a web based T-shirt retailer known as ColorBreak to lift funds for SickKids and kids’s causes.

“I respect SickKids for serving to me face my issues,” says Jason, “and educating me that what issues in life is my well-being.”

Torstar, the Star’s dad or mum firm, is in a fundraising and academic partnership with the Hospital for Sick Youngsters to assist elevate $1.5 billion for brand new services. This content material was produced by Sick Youngsters as a part of that partnership.

DisclaimerThis content material was produced as a part of a partnership and due to this fact it could not meet the requirements of neutral or unbiased journalism.