Posts Tagged ‘Rare Disease Day’

"Rare But Equal"

Monday, February 28th, 2011 by by

Today is the 3rd annual Rare Disease Day. What is Rare Disease Day, you ask? It is a large event organized by EURORDIS in an attempt to raise worldwide awareness for all rare diseases. Forty countries are participating this year (including the US). There are 7,000 rare diseases in the US. Combined, these diseases affect at least 25 MILLION Americans. To learn more about rare diseases in general, go to the Children’s Rare Disease Network.

In honor of this day, I have chosen to do a special blog entry to raise awareness. I will be talking about five diseases, all of which affect someone I know. If, at any time, you want to know more about any of these diseases, please feel free to comment or email me. Also, all headers are linked to pages where you can find more information.

Langerhan’s Cell Histiocytosis (LCH)
LCH affects 1 in 200,000 children and 1 in 560,000 adults. 76% of all LCH patients are under 10.

Langerhan’s Cell Histiocytosis is a disease that acts (and is treated) like a cancer, yet is not classified as one. It is caused by an overabundance of histiocytes (white blood cells) that accumulate in various areas of the body, causing lesions and/or tumors to form.

Treatment for LCH includes chemotherapy, steroids, radiation, and, rarely, a bone marrow transplant. Despite treatment, the disease can and does prove fatal far more often than anyone cares to think about.

Hemophagocytic Lymphohistiocytosis (HLH)
HLH affects 1.2 in 1,000,000 people under the age of 15.

Hemophagocytic Lymphohistiocytosis can either be genetic or secondary to a virus. (Yes, something as simple as a virus can be the start of your nightmare!)

When a person gets sick, their t-cells and histiocytes (i.e. their immune system) activate, causing an inflammatory reaction in order to fight off the illness. In a person with HLH, a defect in their immune system allows this inflammation to exist. Essentially, their body is attacking itself. (more…)


Rare Disease Day 2011

Monday, December 6th, 2010 by by

Let’s make sure we’re heard this year!!!!! I will add photos of Haven to their site soon!

To read about Rare Disease Day click HERE