While awareness of chronic conditions is increasing, there are still many conditions that are overshadowed by their rarity. The Tackling Chronic Conditions Club, however, seeks to shed light on them. In the club, members learn about them and make crafts for people with ones like cystic fibrosis and Epidermolysis Bullosa.
The club aims to raise awareness of rare chronic conditions so those with these conditions know they are not alone, according to club president and sophomore Adithi Aia.
“My cousin, who is also my neighbor, suffers from a very rare chronic condition known as Epidermolysis Bullosa, or EB for short,” Aia said. “It’s a very severe skin disease, where the skin becomes very fragile so patients are very susceptible to infections, especially life threatening infections, and other internal organs also get scarred. And when I started to learn more about her condition, I learned that there is very little research being done for it, and also very little funding for the research.”
Motivated by her findings, Aia created the club to disseminate background information about chronic conditions. The club also holds fundraisers and card-writing campaigns to boost the morale of people affected by chronic conditions, according to Aia.
“I love that it’s not just about one specific illness, like there’s clubs for cancer and things like that, but they do a whole spectrum of different chronic conditions,” science teacher and club adviser Andrew Kranz said.
For its members, the club serves as an opportunity to support research into chronic conditions, as proceeds from the events are donated to the EB research organization Debra of America.
“So currently, we’ve been holding about one bake sale per year,” club treasurer and sophomore Keerthana Pillai said. “In the future, we’re going to have multiple bake sales a year [and] expand our club membership as we are a relatively smaller club right now. Possibly even branching into other chronic conditions, because as of now we focus mostly on EB, but we are looking towards expanding towards other nonprofits in the future as well to support.”
The Tackling Chronic Conditions Club hopes to inspire members to spread awareness outside of school grounds as well.
“We’re very low on commitment, but high impact,” Pillai said. “As an individual member, you aren’t really expected to have a crazy amount of involvement with the club. It might be just like creating a card during lunch or going over to someone’s house to bake for an hour or so. But at the end of the day, those small little actions have so much direct impact on patients’ lives.”
