My Son Has Familial Adenomatous Polyposis (FAP) SyndromeMy ex was not happy with our son’s height,. He felt our son wasn’t growing.I reminded him that our older son, Michael...reactions2comments
A Lifetime of Being Disbelieved10 years ago I was diagnosed with progressive systemic sclerosis, SSc.For many years I've suffered with severe gastrointestinal issues, and for years...reactions1comment
One In Fifteen: My StoryI was born at 24 weeks - weighing under a pound and was only 8 inches long. My parents were told I...reactions1comment
Andersen-Tawil Syndrome Diagnosis: Full CircleIn 2009, my baby brother collapsed while running in a track meet. He was 16, and I already worked as a pediatric...reactions3comments
The Fight for Empathy: Living with Klippel-Feil SyndromeI was born with Klippel-Feil Syndrome (KFS), which means I have a cervical fusion and other often related issues. My fusions are...reactions1comment
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and EmpowermentI believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others...reactions1comment
Phrenic Nerve PalsyTwo and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but...reactions1comment
ARFGEF-1: Neurodevelopmental Spectrum DisorderI grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The...reactions6comments
The Career DebacleManaging a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare...reactions3comments
Ignored SymptomsI became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to...reactions2comments
Sajjona: Trisomy 18 ThriverSajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was...reactions3comments
Surrounded by WaterSince I was born I've been ill. At 5 years old I had bladder, stomach, and bowel problems. I had bladder tests...reactions5comments
It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
28 YearsIt's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32...reactions8comments
A Rare CHANCE LifeMy story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick...reactions3comments
Self-Care Is The Best CareSimply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour...reactions1comment
The Impact a Rare Cancer Has Had On My LifeBeing diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you...reactions2comments
My Wild RideI was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy...reactions4comments
Attack Ataxia: Shundra's JourneyI have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar...reactions2comments
You're Just ComplicatedHave you ever been told that you are complicated by a medical professional? I have time and time again. My journey started...reactions2comments
