Active todayThis is not my child that has a Rare illness, It is me....Reactions0reactionsComments1 replies
Active todayHaving 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...Reactions0reactionsComments1 repliesTips & AdviceTreatment
Active todayPlease 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...Reactions0reactionsComments1 repliesTreatmentSymptoms
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...Reactions0reactionsComments0 repliesDiagnosis
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...Reactions0reactionsComments0 comments
Active 7 days agoThe 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...Reactions0reactionsComments99 repliesAwarenessCopingTips & Advice
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...Reactions0reactionsComments5 comments
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)...Reactions0reactionsComments0 repliesCopingMental Health
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...Reactions0reactionsComments2 comments
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...Reactions0reactionsComments2 comments
Journaling As a Daily Tool for Rare Disease...When I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms were thrust upon me. I didn't know where...Reactions0reactionsComments12 comments
Burning ear syndrome...I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...Reactions0reactionsComments3 replies
Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markers...I just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as well as the boys only research and studies...Reactions0reactionsComments1 repliesResearch & Clinical TrialsCopingAwareness
Grief and Reimagining Advocacy Goals...Life with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss and grief. Grief doesn't have to be for...Reactions0reactionsComments1 comments
Rare Disease Clinical Trials...Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials? Let this be a place to ask questions...Reactions0reactionsComments4 repliesResearch & Clinical Trials
Balancing Work and Caregiving: Parenting Kids With Special Needs...Every morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes before it's time to wake up and do...Reactions0reactionsComments0 comments
Leg movement...2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...Reactions0reactionsComments7 repliesTips & AdviceTreatmentDiagnosis
How Therapies Treated My Musculoskeletal Injuries from Rare Disease...Due to short bowel syndrome (SBS), I've endured years of malnutrition, and even the years I've been well-nourished, I still have nutrient deficiencies that have significantly impacted my musculoskeletal system...Reactions0reactionsComments1 comments
