Awake but trapped...I’ll be weak for a while and hopefully not another attack today but at least I know...reactions16replies
my life with Polymyositis...I needed a cushion or two to rise from a chair, needed bars and a...reactions7repliesDiagnosis
Leg movement...No one has a clue what's going on. Any help is greatly appreciated....reactions8repliesDiagnosisTips & AdviceTreatment
Dietary Changes...Today is the first day since my diagnosis a month ago that I have just felt...reactions11repliesCopingDiet & NutritionNewly Diagnosed
what are some tips for managing rar disease?...Follow the Treatment Plan: Management of a rare disease often requires following a specialized treatment plan....reactionsrepliesDiagnosis
Looking for fellow giants...Hoping to get a better understanding of Acromegaly and find others with the condition.....reactions2repliesAwarenessCopingDiagnosis
Unknown Health conditions that is so discormforting...Hi, everyone I woke up one morning to notice that I have a burning sensation reactions4repliesDepressionSymptomsTreatment
My Journey with HER2-Positive Breast Cancer and Discovering Trastuzumab Botidotin – Anyone Else on This Path?...I'm a 45-year-old mom from Hong Kong, diagnosed last year after a routine check-up turned my world...reactions1reply
Sweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and...reactions6repliesDiagnosis
Persistence in believing in yourself....It has been a long ten years. Ten years feeling like they were stolen only to realize that...reactions3replies
What do you guys think this is...I have a couple of things going on but I don’t have a diagnosis yet but...reactions2repliesDiagnosisTips & Advice
DBS and previous blood clots...I have a complicated history of blood clots that put my scheduled dbs on hold for over...reactionsrepliesCoping
Podcast opportunity for Rare Disease Patients...I have a podcast called Rare connections on YouTube....reactions1replyAwareness
Patient of HHT and Mom of child with HHT...I was diagnosed with HHT (a rare blood vessel disorder) in 2023 after 4 years of...reactions3replies
What fills your cups on hard days?...Living with a rare disease or caring for someone who has one can be challenging....reactions114replies
Will you take our In America survey and help others understand the true impact of rare diseases?...To better understand the patient experience and realities of living with a rare disease, we are...reactionsreplies
Recently been diagnosed ...Na they truly neglected me. Sometimes I have trouble swallowing and read if that's the case then...reactions2repliesDiagnosisDepressionCoping
Undiagnosed still but something is wrong...All I for sure know is I have a pituitary tumor. What do I reactions4repliesCopingDepressionDiagnosis
MSL2 syndrome...Hi everyone, at first sorry for my english I didn't write for a long time and...reactions1replyDiagnosis
lichen sclerosus ...When I did find the right Doctor, and I love her, within a few days of her...reactions1reply
