Thursday, February 23, 2012

Rare Disease Day

Rare Disease Day, February 29th, 2012

In less than a week, 6 days to be precise, on February 29th the world will celebrate Rare Disease Day. This is a day wherein those of us with diseases that don't have the support of governments and the public can speak out in the hopes of gaining a little bit of recognition for our struggles.

This day will hopefully bring about more people becoming aware and more people (including insurances) coming to recognize what it is to live with a rare disease. As of right now the cost for Wegener's Granulomatosis is extremely high.  "Systemic vasculitis is often life threatening and likely to produce disability or death. For example, in the case of Wegener’s granulomatosis, approximately 1500 patients are hospitalized for this illness in the US every year. Eleven percent die in the course of hospitalization, 31% become totally disabled in performing their usual occupation and 20% become partially disabled over 5 years from the time of disease onset. Between loss of personal income and hospitalizations, Wegener’s granulomatosis alone costs our health care system and patients over $40 million per year. This figure does not take into account the loss of income that results from an 11% mortality rate among hospitalized patients with this illness (Hoffman GS et al. Arthritis and Rheumatism. 41:1998; Cotch et al.: Arthritis Rheumatism. 39:1996)." (

With more awareness these numbers may shrink. Less people will die needlessly  from this disease and fewer people will become wholly or partially disabled as more doctors come to recognize the symptoms and learn what tests need to be done. We can even hope that newer treatments will become available; treatments that are less toxic, and closer to a cure. 

For this fifth annual Rare Disease Day, the theme is solidarity. Activities started by different awareness groups around the world are going to converge on the idea that we are "Rare but strong together". All we are asking for people is to spend five minutes on this day to reflect on what it might be like to have a rare disease. To think about those you know that may have a rare disease, and to maybe come up with an idea about how you can help.

  Edit: I was actually just clued into this little tasty bit If you go to this link and click on the Raise Your Hand button, one dollar will be donated to rare disease research!

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