Walking a Fine Line as a Squeaky Wheel: Communicating With DoctorsI 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 OthersLiving 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
'It Takes a Village...' Building a Supportive Rare Disease VillageWhen 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 WarriorsPrior 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
6 Ways to Navigate Advocacy BurnoutAdvocacy 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
How I Gradually Changed My Relationship With Medical PTSDMy 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
Fighting for Rare Disease Medication CoverageLiving 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...Reactions0reactionsComments1 comments
Living With Primary Biliary CholangitisPrimary 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...Reactions0reactionsComments0 comments
Community Views: What Makes Us UniqueLiving 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...Reactions0reactionsComments0 comments
Getting Emotions Out: Why It Matters and How to Do ItEmotion 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...Reactions0reactionsComments0 comments
Paving the Way for ChangeThe 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...Reactions0reactionsComments0 comments
Rare Diseases and Comorbidities: Which One Is Causing My Symptoms?!Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms of comorbidities for a person with a rare...Reactions0reactionsComments0 comments
Rare Versus Under-diagnosed DiseasesI have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease, and one is statistically under-diagnosed. Can you guess...Reactions0reactionsComments0 comments
Cast Your Votes! What Do You Want to See on RareDisease.net?RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and share you own, and much more! Our goal...Reactions0reactionsComments0 comments
10 Things I Wish People Understood About Rare DiseasesBeing a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the person affected, but it also impacts the lives...Reactions0reactionsComments0 comments
Rare Disease InternationalAs a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to...Reactions0reactionsComments0 comments
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for...Reactions0reactionsComments0 comments
Medicaid Needs to Do Better for Rare Patients and FamiliesI recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning of the year. Unfortunately, because of circumstances with...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
Bowled Over Again (in a Good Way!): Being Proactive With My Health GoalsMy 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...Reactions0reactionsComments0 comments
