As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…
Tammy Grover is a mama bear in every sense of the word. She keeps her cubs close and has dedicated her life to trying to help them survive. Two of…
Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…
When it was “that time of the month” nearly everyone around me knew it. My parents knew that my snarky responses had less to do with my attitude and more…
The love between a father and his daughter is pretty unique. You may remember the story from a few years back of Emily Heaton asking her father, Jeremiah, if she…
It pays to have a friend who's a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly. For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She…
What do you do when you have a disease called acromegaly that causes you to keep growing into a 7'1", 346-pound force of nature? If you're Dalip Singh Rana (aka…
According to the Times Recorder, Estelle is living with Tourette syndrome, which is a disorder of the nervous system. Those who suffer from the disorder exhibit uncontrolled, unwanted sounds or…
At 54 years of age, Kathleen was healthy and physically fit. She knew about her grandfather’s death at the age of 30 to a heart attack. She also knew about…
One night in March 2016,13-year-old Treyvon Summers experienced extreme pain that woke him up out his sleep. This was the start of him losing his mobility in both his legs.…
Whenever I feel the stress of life getting to me, I hop over to YouTube and search “random acts of kindness” or “heartwarming acts.” Some of the results? The police…
Loooong before myasthenia gravis (MG) came into the picture, Cathie’s mom used to joke that Cathie must be part fish. She was always in the water. It started with swimming…
According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and…
Among the many uses of social media, medical diagnosis for rare diseases, for everything from acromegaly to Zellweger spectrum syndromes, may not be the first that comes to mind. But…
Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…
While there is good scientific evidence backing up the fact that omega-3 fatty acids found in fish oil can help slow or even prevent heart disease, but does fish oil…
Milestones. Oh, the firsts! When you have a new baby, your whole life revolves around firsts: first bath, first smile, first tooth, first roll, first uninterrupted night of sleep (yes!).…
Ron Taylor is a smoker who has the lungs of a 126-year-old man. According to the Alpha-1 Foundation's website and the Memorial University Gazette, his diagnosis started when he went…
I have worked in the healthcare industry for thirty years; the past eighteen as a specialist nurse. In all those years I have never once heard of SD. Diagnosis is…
Even though August is officially Psoriasis Awareness Month, Healthline recently put together a list of the top online advocates in the psoriasis community that are bringing awareness all year. Here…
At 26 weeks of her pregnancy, this mom knew her baby had serious health concerns. Baby Mayana’s ultrasound was showing her intestines were not inside her little body. They were…
I love coming home. Don’t get me wrong, I get a great deal of satisfaction from working a solid day, but I really appreciate when I take the first steps…
Batten disease is one of the rarest diseases in the world. In fact, it only affects about two to four out of every 100,000 births in the United States, which…
If you've ever been curious about muscular dystrophy, now is the time to learn because August is Muscular Dystrophy Awareness Month! Chances are, even if you think you have no…
I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early 30’s with a disease which…
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