Caregiving, Advocacy, and the Drive to Keep Going...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or lost in one way or another? I often...Reactions0reactionsComments1 comments
Disclosure in the Workplace...When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do. Perhaps it's not necessary, but...Reactions0reactionsComments10 comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)...The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?" She explained...Reactions0reactionsComments9 comments
Amyotrophic Dermatomyositis...Anyone taking injection methotrexate for this?...Reactions0reactionsComments0 replies
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