Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does…
Casey Noe is living with a rare disease that affects almost every aspect of her life, but she doesn't let it stop her from helping others who also suffer from…
Claire Tarr is making a name for herself by moving forward. Diagnosed at 30 years old with idiopathic pulmonary arterial hypertension (IPAH), Tarr refuses to freeze in fear. “I try…
I love the Golden Girls, and oddly enough, I was watching one of my favorite episodes the day before I started writing this post. The episode is the second of…
Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
If you live in America, the first 100 articles during any basic Google search will be Western-centric. I’m not really condemning this. It’s expected that the media's focus will lean more toward…
Maeve Rochford was once told she only had two years to live—nearly two decades ago. Maeve was diagnosed with membranoproliferative glomerulonephritis (MPGN), a kidney disorder, when she was 19. She is no stranger to…
Parkinson’s disease damages the nervous system, and like other motor system disorders, it affects nearly every facet of life. One of the rarely-discussed symptoms of Parkinson's that can have a…
Dancing is all the rage these days, with shows like Dancing With the Stars bringing in top ratings. People are enrolling more in dance classes, and going to the ballrooms in…
Some people diagnosed with Parkinson’s disease or symptoms of dystonia may feel like they’re living in world that’s rapidly shrinking. As their shaking, tremors, and involuntary muscle contractions increase over…
Julia Smith was diagnosed with Glanzmann thrombasthenia (GT) at the tender young age of six months through a series of fortunate events. First, her mother Helen, noticed her infant bruised very…
If you’re a fan of country music, you might recognize Joe Nichols’ name because of chart-busting hits like, “Gimmie That Girl,” “Sunny and 75,” and “Freaks Like Me." But Nichols…
Just getting an accurate diagnosis can be a tremendous challenge for people living with the connective tissue disorders that fall under the Ehlers-Danlos Syndrome umbrella. Common misdiagnoses include fibromyalgia, arthritis,…
Having a rare disease like Addison’s is enough of a challenge for most people. Addison’s disease is a disorder of the adrenal glands which causes extreme fatigue. Now, imagine having…
When Gina Walker's son spoke his first words, she broke down and cried. Not that the words, "Hello, Mom," were so revolutionary; she cried because James was 16 and it…
Chris Ormerod, 55, is a former goalkeeper for the Padiham Football Club (which, if you live in the United States is the game we call "soccer"). He suffers from Churg-Strauss syndrome, a…
Melissa Nearman was a student with big plans and a great work ethic, with her feet firmly planted on the path to achieving her dreams. After many appointments and tests, doctors…
The Northampton Chronicle reports a two-year fundraising effort by the Herbert family in Northampton, UK, has reached fruition, and they are now able to provide their son, Lewis, who is…
So who doesn't love Doctor Who? It seems like no one in the world wants to keep that doctor away, but only a select few enter the ranks of "Doctor Who superfan." Of…
Eosinophilic granulomatosis with polyangiitis (EGPA), also known as Churg-Strauss syndrome, causes inflammation of the blood vessels. It affects approximately one in 500,000 people in the United States. There's no cure, but symptoms…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and…
Jana and Sara are 32 year old twins, born and raised in North Dakota. We had the pleasure of speaking with both of these precious young ladies about their rare…
Nicole graduated high school, but was forced to withdraw from college because she suffers from dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This disorder causes rapid heartbeat, fainting spells upon standing,…
Doctors in New Delhi, India recently made history by performing a heart bypass surgery on a young boy who has the rare condition called homozygous familial hypercholesterolemia, or HoFH. The…
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