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…
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…
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…
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…
Their son, Caeleb, was only eleven months old when he developed a severe bleeding episode. The family had just moved from Houston to New Mexico and they had not yet…
Kimberly Greenberg’s baby, Parker, was born a few weeks early but came into this world on January 2, 2016, as a healthy, normal baby. However, just before Parker was to…
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…
I recall the day, almost six years ago, when I observed the liveliness of joy in one who paraded around in a pink frilly skirt, smiling with merriment while wearing…
Four-year-old Rayhan Majid of North Lanarkshire, UK was a healthy little boy who enjoyed swimming, football, and Taekwondo. He began to have severe headaches in October 2017. His mum,…
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;…
Hello, I'm Ailbhe and along with Adam, my husband, and Sam (5) and Dara (3), we are the O'Reilly family from Dublin, Ireland. Dara has Glut1 deficiency syndrome and was…
The most dramatic. Season. EVER!!! If you've ever watched "The Bachelor" or "The Bachelorette," you've probably heard this refrain from the show's host, talking up the ridiculous antics that keep our eyes…
My name is Becky Tilley. I live in the UK, am married, and my wonderful husband Carl and I have three children: Isabella (age four), Joshua (age two), and Avary…
The number of identified rare diseases continues to climb every year, with the number recently reaching the 11,000+ mark. Some of them have only a handful of identified cases, and…
When Arica Svoboda thinks of her two children, Hayes and Hendrix, she can’t help but fill up with love. She tells Patient Worthy: “My boys are special. Their smiles and…
For many people, a rare disease diagnosis can feel like life is over. For Angel, growing up with homozygous familial hypercholesterolemia (HoFH), a rare genetic condition characterized by extremely high…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
