When asked about what information they wished they were given during their medical journeys, survivors of thyroid cancer reported a desire to have had more information on treatment. An article…
NBC2 has featured the story of pulmonary fibrosis patient John McDaniel since June. Now, McDaniel has received an incredible gift that will enable him to play his favorite sport…
Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…
According to a story reported by The New York Times, on Christmas Day, a physician and mom of two became too weak and fatigued to do much of anything. Her…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page then…
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…
There are three types of hereditary angioedema (HAE)—Type I, Type II, Type III. Original, right? Type I and II are the most common types of HAE. Type III is the rarest,…
“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…
Have you ever been worked by your job so hard that you think "I need a vacation!"? I know I have. Have you ever been worked so hard by your…
Chronic Lyme is as the name indicates...chronic. But it definitely was at it's worst during tough antibiotic treatment. I was recently talking to my girlfriend who is currently going through…
When people hear the word “trauma” they often think of a car crash, assault, witnessing a robbery and sudden violent acts that alter our lives. Throughout my own life I…
I have early onset cervical dystonia. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse…
According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
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