I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
Exercising with CRPS can be beyond difficult, but I’m sure everyone from your doctor to your mother has encouraged you to do it. Why? CRPS already causes you pain, and…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…
I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…
She's young. She's beautiful. And she's living with short bowel syndrome, or SBS. Shante Smith was born with SBS, a disease that renders it difficult for the body to absorb and…
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
Bernie Mac was one of my favorite comedians. He grew up on the south side of Chicago, financially poor but determined to rise above his tough beginnings. "I didn't have to…
En este momento, usted y yo estamos justo en el medio de uno de los más grandes de la historia las edades de información. Tenemos más formas de aprender sobre…
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…
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…
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