Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
Early identification and diagnosis of cancers or rare conditions can significantly improve patient outcomes. For example, early ovarian cancer detection contributes to a better prognosis. Yet many women remain…
Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…
Before you read on, make sure to check out Part 1 of Sarah's story. In Part 1, Sarah discusses the traumatic (and life-threatening!) odyssey that led to her eventual Addison's disease diagnosis…
Scientists are always looking into new ways to advance treatments and improve patient outcomes, especially in disease states with high mortality rates. Currently, ovarian cancer is associated with a…
When she was just 26 years old, Lisa McNeil had a pulmonary embolism (a condition in which a blood clot gets stuck in an artery in the lung, blocking…
When Sarah Williams Maxwell was 18 months old, she was diagnosed with type 1 diabetes (T1D). Outside of managing this condition, Sarah was relatively healthy until 2014, when her diagnostic…
Before you read on, make sure to check out Part 1 of Kristin and Kayden's story. In Part 1, Kristin discusses the diagnostic journey and how Kayden was diagnosed with a dermal…
Charlie and Megan Hieb would do anything to help their daughters, Nora and Lucy. They would truly go to the ends of the earth to ensure that their daughters…
Previously known as Marburg hemorrhagic fever, Marburg virus disease (MVD) is a rare but serious viral hemorrhagic fever with sporadic outbreaks occurring in South Africa, Ghana, Zimbabwe, Uganda, Kenya,…
The Lashoff family loves living in St. Louis; they’ve been there for six years and can’t get enough of it, from watching hockey at the Enterprise Center to marveling at…
A rare disease diagnosis can conjure up a multitude of emotions, from relief at finally learning what is going on to fear or isolation when trying to figure out what…
Before you read on, don't forget to check out Part 1 of Jennifer's story. In Part 1, Jennifer shared her diagnostic journey and the four year stretch it took her to receive…
Pancreatic cancer unfortunately comes with a poor prognosis. It is the third leading cause of cancer-related deaths within the United States, though it is on track to become the second…
When Pamelia J. first realized that her breasts were growing in size, she was kind of excited about it. Pamelia already had large breasts (a J-cup) but really felt…
In the United States, Fast Track designation is granted to drugs designed to treat rare and/or serious conditions and that fill an unmet medical need. The process aims to…
Jennifer Reid is no stranger to rare or chronic illnesses. Over her lifetime, she grappled with Guillain-Barre syndrome (GBS) in 2000; it took nearly thirteen years of treatment and rehabilitation…
Before you read on, make sure to check out Part 1 of our story. In Part 1, Lachlan's mom Donna discusses the long diagnostic journey, what symptoms Lachlan was showing, and how…
Initially, belimumab (sold under the brand name BENLYSTA) was approved for the treatment of patients for lupus and lupus nephritis. It was the first FDA-approved biologic treatment within this indication.…
Gavin Chandler loves toy cars, watching Big City Greens, fans, the “Baby Shark” song, and anything that lights up or makes noise—including, his mother Jessica shares, the vacuum cleaner. He…
When Lachlan Lasikiewicz turned gray one day, his lips a frightening blue, his grandma and aunt didn’t panic. They simply wrapped him up in a blanket and held him close,…
Before you read, don't forget to check out Part 1 of our interview with Laura, Nicole's mom. In Part 1, we discuss Nicole's diagnostic journey, what acute lymphoproliferative syndrome (ALPS) is,…
For as long as she can remember, Tiffany Williams wanted to make a difference, especially in the healthcare field. She earned her doctorate degree and began working as a…
In the United States, Orphan Drug designation is granted by the FDA to drugs focused on the treatment, prevention, or diagnosis of rare conditions; these are those affecting fewer than…
Two and a half years — that is how long it took for the Roublick family to learn that their daughter Nicole had an extremely rare condition called autoimmune lymphoproliferative…
Ever since the first moment he can remember, eight-year-old Dominic Gamez was drawn to travel soccer. He felt strong and powerful as his legs carried him across the field;…
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