Happy Rare Disease Day 2009!
You know what’s a rare disease? That’s right, myasthenia gravis. (I know because it’s on the list. And multiple people with medical and other science-y credentials have written to tell me. And, for lack of in-depth research, I’m just going to take everyone’s word for it.)
So, really, where are the cupcakes? Why do I have no presents? It’s ok, I’ll totally forgive you if you even contemplate donating (time, money, skills, whatever) to a medical cause instead. Go on, contemplate it so that all can be forgiven. I of course would strongly recommend MGA Ireland or the Myasthenia Gravis Foundation of America but, you know, whatever floats your boat.
Thanks, and enjoy your special day!
The Cavan Tommy Hoey Trust (IRELAND)
RARE DISEASE DAY NORTHERN IRELAND 2010
September is Histiocytosis Awareness Month!
Spread the Word about Rare Histiocytic Disorders.
Disease Quick Facts:
• Juvenile Xanthogranuloma (JXG) is a rare benign histiocytic disorder.
• JXG is characterized by groups of yellow, red, or brown papules or nodules (known as lesions).
• JXG may be present at birth, but most often arises in infancy.
• Erdheim-Chester disease (ECD) is a rare form of non-Langerhans-cell histiocytosis.
• ECD is also known as Erdheim-Chester syndrome or polyostotic sclerosing histiocytosis.
• The first case of ECD was reported by W. Chester and Jakob Erdheim in 1930.
• ECD affects predominantly adults, with a men age of 53 years.
• Rosai-Dorfman (RD) disease is a rare disorder characterized by over-production and accumulation of histiocytes in the lymph nodes of the body.
• RD most often affects the lymph nodes of the neck (cervical lymphadenopathy) however, in rare cases can affect the following: central nervous system, eyes, upper respiratory tract, skin, and head and neck.
• The exact cause of RD is unknown. Some researchers suggest that the disorder may be caused by an infectious agent.
• Symptoms of RD are large, painless lymph nodes in neck, underarms, or groin (can be the size of a grapefruit), along with a fever.
It’s time to spread the word about these diseases and we need your help!