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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 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 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 and grief. Grief doesn't have to be for...Reactions0reactionsComments1 comments
Active 7 days agoRare 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 repliesDiagnosisTips & 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 deficiencies that have significantly impacted my musculoskeletal system...Reactions0reactionsComments1 comments
undiagnosed disease...I don't know what's going on but I'm dying...Reactions0reactionsComments2 replies
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 of awareness about the condition can make the...Reactions0reactionsComments5 comments
Active 2 days agoAnimal Companions...Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...Reactions0reactionsComments19 repliesCoping
Horses Helping Rare Diseases: Equine-Assisted Therapies...December 13th celebrates National Day of the Horse in the United States. On this day, people are encouraged to honor the economic, historical, and cultural contributions that horses have made...Reactions0reactionsComments3 comments
My Approach to Taking Medications...In my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually a lot of medications to manage. I really...Reactions0reactionsComments2 comments
I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls) ...(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability to open my fingers; it feels as though...Reactions0reactionsComments5 replies
How to Manage Fluctuating Symptoms With Rare Disease...Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...Reactions0reactionsComments1 comments
Staying Informed on Your Rare Disease for Better Advocacy...Ever since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...Reactions0reactionsComments3 comments
Undiagnosed all season cold sensation of body...I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...Reactions0reactionsComments6 replies
Goosebumps with most emotions/passion, sneezing, yawning.....Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few months it’s escalated, to goosebumps all over my...Reactions0reactionsComments8 repliesSymptoms
