Stories

I was born with Klippel-Feil Syndrome (KFS), which means I have a cervical fusion and other often related issues. My fusions are C1-skull, C2-C3, and C6 or 7 to T1...

I believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others find their inner strength, I also uncover more...

Two and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but then progressed from one to both hemidiaphragms not...

I grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The grown-ups thought I was lying when I said...

Managing a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare Gillespie syndrome. Though I wouldn’t quite call it...

I became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to me and my symptoms! I suffered for years...

Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was diagnosed with Trisomy 18, also known as Edwards...

Since I was born I've been ill. At 5 years old I had bladder, stomach, and bowel problems. I had bladder tests operations for the pain in my stomach, but...

I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really...

It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32. Kidney stones, kidney failure. Tumors wrapped around my...

My story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick extremely often at about 6 months old. Then...

Simply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour into you when you feel depleted, boost your...

Being diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you have cancer. A rare one at that with...

I was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy but I am an excellent swimmer. To feel...

I have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar ataxia is a condition that runs heavily in...

Have you ever been told that you are complicated by a medical professional? I have time and time again. My journey started off with migraines back in the 90s. Then...

I knew from childhood that there was something different in my health from other kids. It seems as if I was born just before various issues were diagnosed and studied...

Josiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition...

My daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little...

I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than...