New Hyde Park native Ellie Melamed opened a nonprofit organization for people struggling with rare, chronic illnesses in August at the age of 22.
For good reason. Melamed has 179 diagnoses in her health chart, according to her father, Ofer Melamed. He said that often a new medical consultation doctor means another diagnosis.
Unveiling Unicorns was officially launched in Aug. after Melamed, who has battled numerous diagnoses her whole life, graduated from CUNY School of Professional Studies.
“I wanted to create a community so that people feel less alone, it makes it easier to cope and because of how isolating everything is,” she said.
The non-profit organization aims to provide support through resource distribution and advocacy, with the goal of raising awareness about rare chronic illnesses. The process of diagnosis and the isolation of dealing with illness are some of the major factors that Unveiling Unicorns hopes to address.
“A unicorn symbolizes the individuals bravely confronting the challenges of rare and chronic illnesses, inspiring community connection and shared understanding,” said the organization’s webpage. “Like a unicorn, they are all unique.”
The individual nature of the diagnoses and care required for patients of chronic rare illnesses can lead to isolation and chaos in the healthcare space. With countless specialty healthcare providers, diagnoses can be contradictory and confusing, without clear treatment paths.
One goal of Unveiling Unicorns is to create space for medical teams from differing specialties to meet and collaborate. Melamed says conversations among doctors could help address more difficult diagnoses and provide clarity for patients navigating confusing treatment paths.
“I want to bring awareness to what life with rare and chronic illnesses is like,” said Melamed. “A lot of people don’t understand it, and a lot of doctors don’t understand it. It makes it harder for them to treat patients in the ways that we need to be treated, so I hope to pull back that curtain.”
She also hopes to provide resources for patients hoping to advocate for themselves to healthcare personnel. Through email templates and virtual events, Melamed said Unveiling Unicorns could help people navigate not only healthcare but also school and work demands or accommodations.
Melamed said that her experience over the years has taught her that additional resources for people in her position would go a long way in preventing the isolation she has felt. She’s already started forming a community with others to discuss issues and resources.
“Through social media, I’ve been able to meet people from Australia, Canada and the UK, from different places all around the world,” she said. “A lot of them are my age and going through the same thing, and it’s been really helpful. It makes me feel less alone, and it makes it easier to cope with everything, which is a big part of Unveiling Unicorns as well.”
Outside of Unveiling Unicorns, Melamed is a musician with acting experience and an accomplished academic history. She was accepted into the Long Island University theater program before transferring to CUNY, where she graduated Summa Cum Laude, according to her father.
“Her last paper was actually published in a journal. She’s really amazing,” he said. “Academically, the [School of Professional Studies] was great, but we could really tell that she was missing out on the social aspects.”
Melamed has high hopes for the organization and is currently gathering interview testimonies to share the stories of others who are battling rare chronic illnesses.
“A lot of these illnesses and rare diseases are invisible. So a lot of times they aren’t really seen, but they’re there, and they affect people’s lives,” Melamed said. “Even when you’re diagnosed with something, it’s not the end of the world. There’s life after that, there’s hope.”
She hopes that hearing people share their stories will help the public gain a better understanding of life and relate to people with a chronic illness.
“Chronic illnesses don’t discriminate,” she said. “It doesn’t matter how rich you are, it doesn’t matter your age, your gender, any of that. It still affects everybody.”
Melamed said anyone who wants to get involved or learn more is welcome to reach out via the Unveiling Unicorns website.
