What am I doing for Rare Disease Day?
For me, itâs more that one day out of the year. Each and every day since 1987, Â I tell anyone who will listen about Cushingâs. Â I pass out a LOT Cushingâs business cards and brochures.
Adding to websites, blogs and more that I have maintained continuously since 2000 â at mostly my own expense.
Posting on the Cushingâs Help message boards about Rare Disease Day. Â I post there most every day.
Tweeting/retweeting info about Cushingâs and Rare Disease Day today.
Adding info to one of my blogs about Cushingâs and Rare Disease Day.
Adding new and Golden Oldies bios to another blog, again most every day.
Thinking about getting the next Cushingâs Awareness Blogging Challenge set up for AprilâŚand will anyone else participate?
And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)
~~~
Why am I so passionate about Rare Disease Day?
I had Cushingâs Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a âsuccessâ but I still deal with the aftereffects of Cushingâs and of the surgery itself.
I also had another Rare Disease â Kidney Cancer, rare in younger, non-smoking women.
And then, thereâs the adrenal insufficiencyâŚ
And growth hormone deficiencyâŚ
If youâre interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/
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