Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…
Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…
In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…
It’s about one month into school starting and the morning routine is starting to feel and look all too familiar. A family scramble, and my voice echoes the same commands…
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…
First of all, many people have experienced a nose bleed at some point. A nose bleed is a very common annoyance for many. These people typically just brush it off as something…
On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…
I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…
Para los padres de niños con distonía, que la frustración es una realidad horrible, en curso. Los padres como Melissa Phelps de Gallaten, Kentucky lo sabe muy bien hijas-Madison y…
Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!
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.…
In my humble opinion, the Urology Care Foundation has set the standard when it comes to providing factual information about Cushing’s syndrome (CS). And if you or your loved one…
2016 has been a very bizarre, upsetting year. As an American, I can’t wait until I can bury most everything about 2016 in the back corner of the history books.…
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.…
Author of Permission to Mourn, Tom Zuba, has developed a new way to “do grief”. His own personal losses of daughter, son, and wife have led him on the path…
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…
Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…
The days of summer are at a close. The temperature has finally dropped, and there’s a chill in the air. A new season is upon us. Finally! School is back…
Cuando se tiene una enfermedad rara, las personas están obligados a darle la mirada. Usted sabe que el uno. Se dice: "Oh, bendita tu corazón; que ha perdido tanto ".…
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…
Dealing with dystonia? Well, here’s an idea that’s tracking well with many neurologists and patients: Botox. Yeah, Botox—for dystonia! Who knew that a little old bovine injection could benefit people…
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…
After talking on the phone with some of my family members, I felt a range of emotions from anger and frustration to guilt and sadness. It breaks my heart because…
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…
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