As parents, we know our son, now fourteen, the best. And my husband and I had expected that at school, they could get to know him well too. We hoped…
Written by Venus Loreto In 2011 and 2016 I lost two children who were both 2 days old. My baby boy who was born in 2011 had an onset of…
By: Tamron Little I like to think back 14 years ago that if someone would have told me that I was going to have cancer, I would have probably…
When I was a teenager, my mom tried to convince me to become a nurse. As a nurse herself, she told me about the rewards of helping people, the challenges…
Written by Dawn Laney, MS, CDC, CCRC The journey to a Fabry disease diagnosis is rarely a clear, straight path. Fabry can mimic more common health issues and lead patients…
Written by: Ashley Walker Like many couples, my husband Johnny and I felt that the birth of our twin sons would mark the beginning of our family’s story. We certainly…
The very first HAE symptom I had brought me to the operating table. Unnecessarily. It was summer, with holidays and grandmother's birthday party- a big family reunion in the garden.…
HAE Junior’s drawing exhibition unveiled the dreams, wishes, and ambitions of children & teenagers living with hereditary angioedema (HAE). The patient organization HAE Junior organized a drawing exhibition named We…
In an innovative collaboration, the TAPS Support Foundation and the Fetal Therapy team from the Leiden University Medical Center announced today a new joint initiative – The Twin Talks Webinar…
Ahead of Cystic Fibrosis Week in the UK, 37-year-old Marc Cotterill, who lives with the disease, has given a video presentation to the European Cystic Fibrosis Conference on the theme…
Written by Kevin Schnurr A renal patient seeks clarity amidst ongoing, conflicting reports. It’s not every day I’m constantly reminded of my status as someone post-organ transplant, but…
Cystic fibrosis patients around the world are fighting to gain access to a range of drugs known as CFTR modulator therapies that could have a hugely beneficial impact on their…
Click here for part 1! At this point my joint pain was severely impacting my quality of life, so I looked for other sources of help. I joined a…
The story of my disease journey will be very familiar to many patients around the world. I was born and raised in a third world country where quality medical care…
This is part 2 of this story, click here to read part 1! Michelle had taken her daughter to see a geneticist who promptly diagnosed her with achondroplasia. He ordered…
Life as we know it has been shut down and completely changed for over a year. When the global pandemic struck, our world was also completely turned upside down. My…
When is hearing loss a good thing to discover in a child? It sounds like the beginning of a “dad joke.” The answer and consequences are real, and in the…
Written by Anis Mohd Nor I first became a mother in 2017. The pregnancy was a bumpy one - while I felt blessed to be pregnant after several years of…
Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life. As you…
By: Malika Abrams I was eight years old when I found out that I was sick. After spending a beautiful summer day at the community pool with my parents, brothers,…
Note: This guide was originally published on cysticfibrosis.com Written by Imogene The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the…
I used to love a margarita on the rocks with a twist. At some point in my late 20s, I went from the carefree life of a young healthy person…
Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…
Written by Neil Smith I have a rare hormonal condition called Kallmann syndrome. Its main symptom is a failure to start or fully complete puberty. It is also associated with…
Written by Kendra J. Bjoraker, Ph.D., L.P. Living well with a chronic condition such as Fabry can seem contradictory. Following diagnosis, you don’t have a shelf in your mind that…
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