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…
There are certain doctor’s appointments that I dread. The top three appointments that can cause me to lose sleep include annual OB/GYN visits, mammograms, and eye exams. For me, my…
When I was in my 20s and 30s, I performed in a lot of musical theater performances— “Music Man,” “Big River,” “Carousel,” “You’re a Good Man, Charlie Brown.” I was…
According to the AKU Society, Flavia was only a few weeks old when her parents noticed that her urine had stained her diaper an unnatural brown color. Flavia and her…
Inspiration is everywhere—from the words of your favorite writer to the blooms and leaves on your morning walk. You just need to open your eyes, and breathe it in. Sometimes, inspiration just…
Orphan drugs, for those of you who don’t know, are those designated especially for rare diseases. They respond to a public health need, but not necessarily an economic need by…
If you remember reading our story on 12-year-old Markie DeVoe and his choroideremia, we have an important update for you. If you haven't read the story yet, you can find…
If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything…
You've got to be dedicated to train for a marathon. When Brit Joe England signed on to raise pounds for the Alkaptonuria (AKU) Society, he was optimistic about finishing the…
You’re more likely to recognize his voice rather than his face. If you love segments like “Food News with Froggy” or “Phone Taps” from the Elvis Duran and the Morning…
Waldenstrom macroglobulinemia (WM) is a devastating form of non-Hodgkins lymphoma. Specifically, this cancer starts in the B cells of the body (B lymphocytes). Waldenstrom's cancer cells are capable of making…
It started out harmlessly enough—a Greatest Loser- type competition between co-workers. Everyone who wanted to participate put in $10, weigh-ins would be weekly, and the person who lost the most…
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