My Rare Disease Does Not Make Me a Burden...I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of shame and anger within me. I asked myself...Reactions0reactionsComments1 comments
Looking for fellow giants...Hoping to get a better understanding of Acromegaly and find others with the condition.....Reactions0reactionsComments1 repliesAwarenessCopingDiagnosis
Groin Stronger: How My Body Is Learning to Trust Itself Again...When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a trilogy of articles. Or physical therapy. But what...Reactions0reactionsComments0 comments
My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking....Reactions0reactionsComments3 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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 comments
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, I was corrected by a provider with the disclaimer that being a squeaky wheel can...Reactions0reactionsComments0 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...Reactions0reactionsComments4 comments
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...Reactions0reactionsComments1 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 repliesCostCopingDiagnosis
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments4 repliesCopingDepressionDiagnosis
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...Reactions0reactionsComments1 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...Reactions0reactionsComments0 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...Reactions0reactionsComments3 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...Reactions0reactionsComments3 comments
