By Hayley Crandall
Milwaukee teen Maddalyn Weishan is spreading awareness and educating people about hemophilia and other blood disorders through participation in Hemophilia: The Zoomsical, a virtual musical airing July 31st on Facebook Live.
Hemophilia is when a person’s blood is unable to clot. The most common example of this is bleeding a lot when skin is cut, but can also be related to internal bleeding, according to Weishan.
The five-song musical, produced by Believe Limited, an organization advocating for rare disease communities, follows the lives of high school students as they work to make it through school while facing challenges that come with blood disorders.
The ultimate goal of it is to inform people about the disorders and what they can really entail, according to Weishan, who is a genetic carrier for hemophilia.
“The goal of the musical is to inform people about hemophilia and clear up a lot of misconceptions there is around this condition,” said Weishan. “It talks about how hemophilia and other blood disorders effect you not just health wise but also with your mental health.”
It stars 24 teens across America who have in some way been affected by blood disorders. The group features diagnoised teens, genetic carriers, or family members of someone living with a blood disorder.
Practices have been taking place weekly on Zoom and each participant records and sends in their performance, according to Weishan.
Weishan has some prior musical experience with her local theater group but admits this virtual format has been totally out of her comfort zone.
“It was kind of weird at first because I had never done anything like this before,” said Weishan. “I’m so used to doing it on a stage with real people next to me and watching me, but when recording I was able to do as many takes as I wanted to for the final edit.”
Weishan also remarks this opportunity has been a great way for her to meet others within the blood disorders community.
“Before I started this, I didn’t really know anyone outside my family that had a bleeding disorder,” said Weishan. “I was able to learn and connect a lot more with the community. I met a lot of amazing people and made a lot of amazing friends.”
While Weishan is not diagnosed herself, she has had her family affected by it. Feeling connected personally to the subject and community, she’s glad it can clear the air around some misconceptions.
“One thing is when someone has this condition, some people treat them like they are very fragile and can break at any moment,” said Weishan. “Like they always need to be careful of everything when really, people with this condition, know their limits. We cover it in the show that like people know their condition, they don’t need random people telling them how to live their life.”
Especially during times like these, an understanding and awareness around blood disorders is much needed. Those living with blood disorders are just as at risk and can be affected greatly by COVID-19, according to Weishan.
Hemophilia: The Zoomsical premiers on July 31st at 7 p.m. on BloodStream Media’s Facebook page. It’s made possible by Breaking Through!, a musical theater-focused organization produced Believe Limited and sponsored by Biomarin.