Active todayMy symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking....Reactions 0 reactions Comments2 replies
Ignored Symptoms...I became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to me and my symptoms! I suffered for years... By Sandraw1 min readBookmark for laterReactions 0 reactions Comments0 comments
Active 3 days agoFrom Parkinson’s to Progressive Supranuclear Palsy...10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was sealed. Following the direction of my Movement Disorder...Reactions 0 reactions Comments0 replies
Sajjona: Trisomy 18 Thriver...Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was diagnosed with Trisomy 18, also known as Edwards... By hmurphy72 min readBookmark for laterReactions 0 reactions Comments0 comments
When Rare Disease Needs Don't Make Sense to Others...Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my experience, the social aspects of living with a... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments2 comments
Active 6 days agoAnyone have any advice about CIP?(Congenital Insensitivity to Pain)...I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...Reactions 0 reactions Comments1 repliesAwarenessTips & Advice
'It Takes a Village...' Building a Supportive Rare Disease Village...When you become a parent, people say you will have a village that will be there for you every step of the way. And you believe them. Yet, for some... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Clinical Trials Are Transforming the Future for Rare Disease Warriors...Prior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical stories, such as the notorious Tuskegee experiment, had... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 comments
Active 6 days agoI am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. ...Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...Reactions 0 reactions Comments1 repliesCostCopingDiagnosis
6 Ways to Navigate Advocacy Burnout...Advocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated comments. Sometimes, a deep fatigue sets in, and... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
Active 6 days agoUndiagnosed still but something is wrong ...Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...Reactions 0 reactions Comments1 repliesCopingDepressionDiagnosis
Active 5 days agoFinding a specialist ...I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...Reactions 0 reactions Comments0 repliesHealthcare TeamTreatmentTips & Advice
How I Gradually Changed My Relationship With Medical PTSD...My rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress disorder (PTSD). I changed from an outgoing, carefree... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Surrounded by Water...Since I was born I've been ill. At 5 years old I had bladder, stomach, and bowel problems. I had bladder tests operations for the pain in my stomach, but... By Margann1 min readBookmark for laterReactions 0 reactions Comments3 comments
Fighting for Rare Disease Medication Coverage...Living with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature of our condition. Other complications are social or... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments1 comments
Community Views: What Makes Us Unique...Living with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But it is far from everything you are. To... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
I have Myasthenia Gravis and Parkinsons...I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...Reactions 0 reactions Comments3 repliesAwarenessCopingResearch & Clinical Trials
Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am reminded by my own therapists that when we... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
FeaturedActive todayBiggest challenges you face in your current journey?...Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions 0 reactions Comments21 repliesCaregivingCopingTips & Advice
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys no one understands unless they live... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
