Managing Overstimulation as a Parent...Overstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be triggered by the constant sounds, sights, and activities...Reactions0reactionsComments0 comments
Active 3 days ago10 Year old with medical mystery...Good Day Everyone My son has been sick for about 4 months. He is seeing doctors and was in the hospital more than once and still he is not beter...Reactions0reactionsComments0 replies
Active 5 days agoLife with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis...Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis (Axial for me ). Tbh, living with...Reactions0reactionsComments0 repliesTips & AdviceCopingDiagnosis
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 ...Reactions0reactionsComments4 repliesSymptoms
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...Reactions0reactionsComments1 replies
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...Reactions0reactionsComments0 replies
Active 2 days agoFATTY 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...Reactions0reactionsComments2 repliesHealthcare Team
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...Reactions0reactionsComments1 repliesTips & 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...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
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...Reactions0reactionsComments0 comments
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...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)...Reactions0reactionsComments22 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...Reactions0reactionsComments4 comments
