Teegan is Kelly and Matt Olson’s youngest daughter, so when she began missing developmental milestones, her parents were on alert. After a variety of tests over the span of…
A 15-year search for a diagnosis by Lilly Grossman and her parents ended in 2013. Lilly became the first person in the world to be diagnosed with ADCY5-related dyskinesia.…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
For the first year of his life, Warner Kays looked like an average, healthy, happy baby. He crawled around, took joy in family time with his older sister Presley, and…
My name is Nicholas Alves, and I am a 26-year-old male from Massachusetts. I have a completely life destroying condition called PSSD, or post SSRI sexual dysfunction. PSSD can arise…
For many people, a broken bone would severely interrupt their life. But six-year-old Avery Balcazar has learned to live with it—even when it’s tough. As reported by CBC News, Balcazar…
When Dr. Niranjana Parthasarathi, M.D., was in medical school at Virginia Commonwealth University (VCU), she still remembers a lesson that changed her life. Her course introduced her to systemic lupus…
It was the second time 26-year-old Bruce Campbell had to deal with paralysis. At the age of six, he was paralyzed by Guillian-Barre syndrome which caused an attack on…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
When Camille Wahl was a child, she loved Irish step dance. She translated her love physically, becoming a competitive dancer until she was ten years old. It was then, reports…
If you’re looking for drive and determination, look no further. 14-year-old Sophia Nohre is ready to tackle any obstacle in her path—and she does so relentlessly. Her swimming coach, Adam…
How Jenny’s Voyage Was Salvaged BigIslandNow recently carried the story of how Jenny’s dream was almost shattered when she was sold a $10,000 used engine rather than an $8,000 new…
In June 2023, Michael, a 35-year-old man from Houston, started feeling ill and achy. By June 19, his symptoms had worsened significantly. Both Michael and his family believed that he…
At one point, Adam Isaac thought that he might become a professional golfer. But, sidelined from injury, he poured his heart and soul into music. His efforts played off;…
Kona nurse Jenny Decker, 38, left Honokōhau Small Boat Harbor, Kailua-in Hawaii on June 28, 2023. A recent article in BigIslandNow announces that Jenny is ready to circumnavigate…
According to a story from Greenock Telegraph, Michael Conway of Port Glasgow, UK lives with adrenoleukodystrophy, a rare disease. Recently he received a letter of support from William and Kate,…
Debbie Ferlito had always lived an active life. There was nothing she loved more than throwing herself into athletics, than testing the limits of her body. And she was…
According to a story from wtae.com, doctors didn't think that 11-year-old Bryson Ackermann would be able to return to playing baseball after he was diagnosed with acute flaccid myelitis, a…
At five years old, Traviana Dunston has cultivated a deep love and appreciation for music and dance. She’s an entertainer at heart: full of energy and light. Right now, Traviana…
Two days. That’s all it took for Jill and Jeff Ackermann to watch their son’s condition mysteriously deteriorate. On Saturday, six-year-old Bryson was the energetic, athletic, and bright-eyed little boy…
There are an estimated 10,000 rare diseases. A majority of rare diseases are genetically oriented. Because of this, we learn more about health and disease as we learn more…
Lonnie's mother, Stephanie Pesterfield of Colorado Springs, still finds it difficult to talk about her son Lonnie’s near-death experience. Yet as published recently in People, Stephanie and her son want…
Family gatherings can be fun, boisterous, and sometimes full of conflict. During one such event, Donnie Adams found himself intervening to break up a fight between two people. Although he…
Marco and India Biviano felt like something bad was happening to their young son Luca. His stomach was distended and painful. Luca frequently developed chest infections that required round after…
Congenital muscular dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice…
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