TGIF, everybody! This week we're sharing music videos by a singer who raises awareness for aHUS, a journey of a dysautonomia patient, and a story about a man who was…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how…
Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
We all have those well intentioned colleagues, friends, and family members. You try to explain to them what primary biliary cholangitis (PBC) is, what’s going on in your body, and what…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
This blog post was originally published on the KIF1A blog. We are republishing it here on Patient Worthy with permission. I was recently asked if I was confident that a…
National Nurses Week begins each year on May 6th and ends on May 12th, Florence Nightingale's birthday. Think about it... every time you visit a doctor's office or hospital, you…
May the fourth be with you! This week we're spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing your spouse to CF, the…
Terrence Merrill shares the challenging emotional realities of raising a child with Sanfilippo syndrome. You can read more background about the Merrill's battle against this rare disease in our article here.…
At the age of 28, Suzy remembers medical students feeling her puffy hands and feet. Her feet were so expanded she had to wear wide shoe sizes. Her fingers were…
When I was diagnosed with Parkinson's Disease (PD) in 2000, I first thought of my three children and how my diagnosis would impact them. How would I tell them? Would I…
Happy Friday Everybody! This week we're spotlighting two parts of one patient story. We also have news on Alfie Evans and epilepsy research. Sit back and enjoy this week's Editor's…
I lost my fiancé, Ashley “Bea” Briggs, due to complications from cystic fibrosis a little over a year ago in early 2017. We met early in the summer of 2015…
Have you read part one of Loukisha's story? Check it out here! When I imagined life with my husband and children my plans didn’t include surgeries, walkers, canes, a wheelchair,…
From birth until my mid-thirties I was a very active person. I loved dancing West Coast Swing, doing yoga, and cooking large meals for my ‘Ohana. The word "'Ohana" describes…
Happy Friday Everybody! This week we're spotlighting three patient stories: an ALD patient full of optimism and love, a beauty pageant contestant with a noble goal, and a woman with…
The 2018 Mrs. Maine International Pageant will be so much more than a celebration of poise and beauty. It will also make history when Devan Demmons will proudly walk on…
Content warning: discussion of ableism and eugenics A woman is suing the Japanese government over her forced sterilisation four decades ago. This is the first case to be brought against…
Hope everybody is enjoying the warm weather! This week we have patient stories about a woman with MS who started a support group and a rare mom who took issues…
No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects connective tissue throughout the body. It…
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