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...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...reactions4repliesDiagnosis
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...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...reactions108repliesAwarenessCopingTips & Advice
My Chronic Pain Scale: Describing Pain 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...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)...reactions22repliesCopingMental 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...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...
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...reactions4comments
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...reactions12comments
Burning ear syndrome...I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...reactions17replies
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...reactions1replyResearch & Clinical TrialsAwarenessCoping
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...reactions3comments
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?...reactions5repliesResearch & 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...reactionscomments
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...reactions8repliesDiagnosisTips & AdviceTreatment
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...reactions1comment
The Importance of Connecting With Mentors as a Caregiver...Caregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack...reactions5comments
Animal Companions...Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share...reactions27repliesCoping
