My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking....reactions3replies
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...reactions2comments
From 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...reactionsreplies
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...reactions3comments
Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors...I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer that being a squeaky wheel can cause doctors...reactionscomments
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...reactions4comments
Anyone 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...reactions1replyAwarenessTips & 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...reactionscomments
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...reactionscomments
I 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...reactions1replyCopingCostDiagnosis
Questions to Ask Your Doctor When You Have Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you may feel a lot of uncertainty. Your healthcare...reactionscomments
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...reactionscomments
Undiagnosed 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...reactions4repliesCopingDepressionDiagnosis
Finding 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...reactions1replyTips & AdviceHealthcare TeamTreatment
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...reactionscomments
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...reactions4comments
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...reactions3comments
Living With Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can cause serious liver damage, called cirrhosis. Living with...reactionscomments
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...reactionscomments
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...reactions3repliesAwarenessCopingResearch & Clinical Trials
