Halloween is here! The night known for indulging and splurging on candy. For some people this may not be an option though, for instance people with familial hypercholesterolemia. Eating a…
What do you think of when you hear "diabetes"? I always think of lots of sugar, soda and candy. Diabetes can really affect anyone's life, as I learned recently from…
You were rear-ended on the Interstate a year ago, and after the obvious injuries healed, you still had pain. But not just pain—really intense pain, and it shows no signs…
Congratulations! You're about to have a bundle of joy! You have names picked out, and you've been preparing for the past nine months to welcome this new little family member.…
I wonder if most families have a backup plan—especially when it comes to a family crisis? I’ve been reading about aplastic anemia this summer and am absolutely baffled about what…
Happy Halloween! A lot of people grow out of Halloween. I personally love any reason to celebrate. I believe that life is short and it should be enjoyed at every…
This informative video describes in simple layman's terms what cystinosis is, how it affects the body, and how it can be treated. But the main idea I came away with…
About a year ago, at the American Academy of Rheumatologists Annual meeting, there was a report presented about tofacitinib (TOFA) for the treatment of ankylosing spondylitis (AS). Tofacitinib (sold as…
If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…
Keenan Cahill is a YouTube sensation who just happens to have Maroteaux-Lamy syndrome. Although, after watching his channel for a half hour, he isn't letting it hold him back from…
La tecnología actual nos está llevando a nuevas (in)cómodas alturas, a un ritmo que pocos les sorprenderia. Para aquellos que están viviendo con la narcolepsia, este avión no tripulado de…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…
During one of those “dog days of summer,” I was searching around for some inspiration; I’d been feeling blue because a friend of mine, who is in her 50s and…
Carnitine palmitoyltransferase II deficiency (CPT II) is a long-winded way of describing a fatty acid oxidation disorder that prevents the body from using fat. It's caused by enzymes that aren't properly functioning,…
Are you planning on handing out candy for Halloween? If so I have a suggestion for you! This is the perfect opportunity for you to advocate for the rare disease…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
They are called, "butterfly children." These butterfly children earned their names for their fragile skin---said to be as delicate as the wings of a butterfly. The official name of…
Approximately one in 15,000 people have a defect in their HTT gene and the outcome of that defect is ultimately life-ending. It's called Huntington's disease, or HD, and the average…
I recently read an article about a 22-year-old man from Utah who’d just returned from a missionary service in Brazil and was diagnosed with aplastic anemia. This is so sad…
Don't miss the last three MDS Patient & Family Forums in 2016! All three events are free, sponsored by The MDS Foundation. Topics to be covered include: Therapies and Patient…
Patient Worthy asistió al foro anual de la Fundación EveryLife el pasado martes en Washington, DC. Fue un taller de un día completo acerca de por qué la incorporación de…
I recently read an article about a little boy who’d been diagnosed with aplastic anemia, a mysterious and very serious illness that can strike adults as well as children. It’s…
If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there's…
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