Rare Diagnosis Experiences...How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...reactions98repliesDiagnosisSymptomsNewly Diagnosed
How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with a chronic illness is a challenge. My spirit...reactionscomments
Jesse Mercury...Jesse Mercury is the host of the Major Pain podcast, where he interviews people living with chronic illness and disability. The goal of the show is to create community around...
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and not-so-slight bleeding into that joint over nearly 5...reactionscomments
5 Rare Life Challenges: A Caregiver Perspective...As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely hard. The general public is not well-educated on...reactionscomments
How to Promote Legislative Advocacy for Rare Diseases...Can you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack of resources, treatment options, and support can leave...reactionscomments
Do you allow your child with a rare disease to go on overnight school field trips?...If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....reactions3repliesTravelCaregiving
Role Reversal and the Patient-Caregiver Relationship...I have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me)...reactionscomments
Patient with strange symptoms...I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...reactions4repliesDiagnosisSymptomsTips & Advice
How to Care for Someone With Congenital Adrenal Hyperplasia...Caring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right...reactionscomments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...As an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I...reactionscomments
Voices in the Rare Disease Community: What's Your Story?...Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We...reactionscomments
Tips for Finding the Right Doctor...Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help...reactionscomments
Active 8 days agoAdrenal hormones...Hi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system. Everything is fine. The problem is that in...reactions3repliesTips & Advice
Parental Partnership: Supporting Families With a Child Affected by a Rare Disease...When I became a mother at 26 years old and my husband a father at 27 years old, we learned that the future ahead of us would be characterized by...reactionscomments
Living with Mast Cell Activation...62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I am finding out and finally knowing these words...reactions3replies
My rare disease caused my kidney failure ...I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...reactions7replies
Coordinating Care With a Rare Disease...Many general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also...reactions1comment
Understanding Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also progressive, which means it can get worse over...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with a rare disease. My middle is a high-energy...reactionscomments
