unexplained throat and neck pain for 7 weeks now. ...hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have...reactions2repliesDiagnosisSymptomsTreatment
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home...Every day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make...reactionscomments
Summer With Sun Sensitivity...I love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
Do You Take Rare Disease Rest Days?...As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and...reactions2comments
Treatments for Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This...reactionscomments
Understanding Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is...reactionscomments
Colonoscopy to rule out Mast Cell Activation Syndrome......What exactly are they trying to find out from the results of Colonoscopy?...reactions4repliesNewly DiagnosedDiagnosisSurgery
Caregiving, Advocacy, and the Drive to Keep Going...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
Disclosure in the Workplace...When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)...The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How...reactions9comments
My Rare Disease Does Not Make Me a Burden...I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of...reactions1comment
Looking for fellow giants...Hoping to get a better understanding of Acromegaly and find others with the condition.....reactions2repliesAwarenessCopingDiagnosis
Groin Stronger: How My Body Is Learning to Trust Itself Again...When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking....reactions3replies
Ignored Symptoms...I became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to...reactions2comments
From Parkinson’s to Progressive Supranuclear Palsy...10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was...reactionsreplies
Sajjona: Trisomy 18 Thriver...Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was...reactions3comments
Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors...I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer...reactionscomments
When Rare Disease Needs Don't Make Sense to Others...Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my...reactions4comments
