help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!...I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to...reactions4repliesSymptomsTips & Advice
When Living With a Rare Disease Negatively Affects Sex Life...Sigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what...reactions5comments
Jake Marrazzo...Jake Marrazzo is a writer, author, and patient advocate living with Duchenne muscular dystrophy. He was diagnosed at 8-years-old, and was in...
The Power of Friendship in the Rare Disease Community: 3 Reasons to Connect...Living with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should...reactionscomments
Reach for the Stars! Why Media Representation Matters...Recently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the...reactions3comments
Managing Overwhelm: Giving Ourselves Permission to Take a Moment...Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
Dear Caregiver......As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything...reactions5comments
Fertility Preservation for Rare Disease Warriors...In a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden...reactionscomments
Recognizing the Symptoms of Eye Conditions...Understanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such...reactions3repliesSymptoms
Exploring Non-Drug Pain Management Options...Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
Mystery...No doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in...reactions5replies
Undiagnosed with neurological symptoms and multiple misdiagnoses...Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About...reactions5repliesSymptomsDiagnosis
My Strategies for Living With a Rare Disease Long Term...Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Symptoms of Eye Vision Damage?...Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or...reactions4repliesSymptoms
Looking for rare disease advocates for a podcast....I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar...reactions1reply
Road to NMOSD...In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired...reactions3replies
Benefits of Taking an Advocacy Break...Since becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
My First Rare Disease Conference...Recently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora...reactions2comments
Medical Mystery - Can anybody help? ...My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog...reactions4repliesDiagnosisSymptoms
Grappling With the Possibility of Having Another Rare Disease...My mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision...reactions2comments
