FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent...reactions3comments
SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"...Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially...reactions6repliesMental HealthTips & Advice
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...reactions3comments
METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"...METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in...reactions23repliesAwarenessDiagnosisSymptoms
Mourning the Loss of the Old Me...I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
Unknown Illness - Side pain & Snycope ...For the past few years I have seen multiple specialists and had many tests. Physical - Female, white, 32yo, 200 lbs. Historical...reactions5repliesDiagnosis
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
