Anyone experience this and how do we get help??...My son and I started having symptoms a year and a half ago, started after a camping trip and we had a lump on different parts of the body ...reactions4repliesSymptoms
Building Your Child's DMD Care Team...Caring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team of different doctors and therapists. This is called...reactionscomments
Aunauthorized people try to get your medical information...Hello, My deceased brother’s ex wife contacted Mayo Clinic and my brother’s attorney trying to get access to my medical records. Has this or a similar situation ever happen to...reactions1reply
Ancestral inbreeding...As a decendent of lots of inbreeding, I have many expressed recessive "rare" traits. None have proven fatal or longevity-altering (yet), but the anomalies make life and especially medical treatment...reactionsreplies
FATTY LIVER CANCER...MY CANCER WAS MISSED ON MY XRAYS 1 1/2 YEARS AGO AND NOW I HAVE A DEATH SENTENCE IS THERE ANYTHING THAT COULD HELP ME Pro Long OR BEAT THIS...reactions3repliesHealthcare Team
Sponsored: Raise Awareness for Sjögren’s Disease by Sharing Your Story...By argenx Every story matters. Whether you’re navigating a Sjögren’s disease diagnosis and its symptoms or providing care for a loved one, sharing your experience can help others feel empowered...
Having a disease without a name ...Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...reactions4repliesTips & AdviceTreatment
Please help my wife, she has a disease that is difficult to diagnose...Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...reactions2repliesTreatmentSymptoms
Practical Tips for Managing Day-to-Day Life With DMD...Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in helping your child live as fully and comfortably...reactionscomments
Feeling pure psychological discomfort after being on medication...Hi everyone! I am currently on Effexor, Seroquel and Risperidal. I have been on Effexor since Janauary 2024, Risperidal since March 2024, and Seroquel since November 2024. I have been...reactions4repliesDiagnosis
Sponsored: A hopeful road for a family affected by a fatty acid oxidation disorder...By UltragenyxLC-FAOD stands for long-chain fatty acid oxidation disorders, which are rare metabolic conditions that run in families. With each of these disorders, a specific enzyme that helps the body...
The Weight of Rare Disease Giveaway...The Weight of Rare Disease Giveaway is now closed. Thank you for your interest! Living with a rare disease comes with daily challenges – both seen and unseen. The physical...reactionscomments
The Weight of Rare Disease...This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...reactions108repliesTips & AdviceCopingAwareness
How I Rate Various Pains With Multiple Rare Diseases...I don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But honestly, I say that because I get tired...reactions6comments
What helps you avoid burnout or chronic illness fatigue?...Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...reactions22repliesMental HealthCoping
Glasses as a Form of Unique Expression With Rare Disease...Last week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have done this many times but always get excited...reactions2comments
Aimee Perez...I was officially diagnosed with psoriasis at 17 years old in 2005. I experienced my first sign of plaque psoriasis at 12 years old which I believed to be severe...
Finding Your Advocacy Voice: Embracing a Safe Community...As caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and driving positive change in the healthcare landscape. It's...reactions4comments
