February 22, 2010

• No Photos. Just a plea for all of you to do something.

  February 28 is National Rare Disease Day.  I won't copy and paste all of what is so clearly explained elsewhere, but let me tell you that my condition, Dercum's Disease, also known as adiposa dolorosa, is on the National Organization for Rare Diseases' top 10 list this year - at number THREE!  To get any kind of recognition about our condition thrills the hearts of those of us who live with this disease.  Very, very few medical personnel, from physicians to nurses to technicians of all kinds, have ever even heard of Dercum's, let alone treated someone with this condition.  There is no treatment.  There is no known cause.  There is no cure.  What you get when you are diagnosed is months or even years of trying this pain medication, that pain medication and another pain medication, until, hopefully, you and your physicians find what works for you.  I'm very thankful that my doctors care enough to do some research and found a good combo for me.  It's not perfect - if I overdo things (actually, if I DO anything) I suffer for it, but at least I don't live with blinding pain every minute like I did for nearly 6 years before we got this combo. 

  On that website cited above, you can check what your state is doing with regard to this Day - has your Governor declared it to be Rare Disease Day in your state?  Mine has not, but I have emailed him, using the text in the sample letter (adapted for Pennsylvania) provided on the Rare Disease Day website.  Simple - took about 4 minutes.  I'm asking each of you to do the same thing - find out what your Governor has or hasn't done, write to thank him or her if it has been proclaimed in your state, and if it hasn't, please take that few minutes necessary to write asking that it be done.  Dercum's is one of hundreds of diseases considered to be "rare."  That means thousands - millions! of people in this country suffering because of lack of research and proper treatment for their conditions. 

  If this day only causes one or two people in each rare disease sufferer's life to be more aware, more understanding, more supportive, we've succeeded beyond our wildest dreams!  If more happens - like one more condition has enough funding for research and development of treatment, whoohee!   

  Thank you!

  me<><

  PS To find out how to contact your governor, just do a websearch for "state of ..... governor."  They all have websites with contact information. 

  • 10:16 am
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