MDS Patient & Family Forum Miami, Florida November 12, 2016 9:30 am - 2:30 pm This Free Event is sponsored by The MDS Foundation, Inc. Topics to be covered include: Therapies and Patient…
Sociologist Georg Simmel, calls Gratitude the “ moral memory of mankind”. But researchers tell us that gratitude is more than a moral or ethical acknowledgement of help of some kind.…
I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair…
Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…
Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…
Have you experienced unexplained, sudden weight gain? Or, despite the number of times you’ve faithfully stuck to a diet, have you failed to lose weight? If either or both of these…
Cushing's disease is caused by the pituitary gland creating too much andrenocorticotropic hormone, or ACTH. In 80% of diagnosed cases, Cushing's disease is the result of a benign tumor on the…
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
Have you ever noticed when you have a cut, and it's healing, you sometimes feel itchy? Those are the mast cells helping your body to heal while helping defend against…
We hear of feuding nations: Countries that share a border, yet can't get along with each other. So, it's heartening when I read of a young girl in Pakistan who…
For anyone who watched the television show "Law and Order," we all know that whatever the case, all the details were always wrapped up in under an hour. Prosecution. Check. Defense. Check.…
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…
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