Today is Rare Disease Day

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating with a bunch of info today (and every day!)


Why am I so passionate about Rare Disease Day?

I had Cushing’s 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 “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here

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Help Grow the Rare Disease Congressional Caucus

Take Action . Rare Disease Legislative Advocates at 10.56.06 AM


Help us strengthen the rare disease community’s voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at

It’s easy – the Action Center has a draft letter that will automatically be sent to your Member of Congress – just put in your name and address & click send. We also encourage you to personalize the letter to share information about your specific disease. If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead – these are just as important to send!

It can take up to 10 letters from constituents for a Member to respond so please share this Action Alert with your friends, family & colleagues. Join our Facebook event & invite your friends:

Monday, 12 Weeks Post-Op


Looks like I’m falling w-a-y behind again.  That’s a pretty good thing since that means normal life is resuming.

When we started rehab, DH was the only student – now there are 5 and they seem to get along pretty well.  Slowly but surely, the challenges are getting greater.  Today (or soon) he will start using weights.

Today’s hav is 14 of 36, just over 1/3 of the way through.

He’s been driving pretty normally for a few weeks but still can’t walk the dog.  Maybe that will come after the weights get started.

We had our class with the dietician and there was only one other woman in the class so it was more of a private session.  At the end, 3 of the guys from Mended Hearts came in to see if we had questions.  One said that he liked having me in the meetings and talking about the role of the caregiver!  This is just not me, talking in any group!

Last week, we had out one-on-one with the dietician.  I’d pretty much already learned most of it from online and books but it was good to check.

This week, on Tuesday, we have a class on how the surgery is performed.  I’ve seen videos but it will be nice to see what they have to offer.  We can also observe a live surgery.  We’ll see!

Last week, on Tuesday, we had the privilege of attending a Congressional Caucus on Rare Diseases.  I took the opportunity (of course!) to say a few words about Cushing’s.  If you’re interested, my write-up is here:  Cushing’s on Capitol Hill.

I have an opportunity for a conference in San Francisco in June.  I happened to have airplane credits so I, without thinking, I got 2 tickets.  Hopefully, DH has the go-ahead to fly by then!

I’m amazed at how well things are going at the 3 month mark.  Hopefully, it’s smooth sailing from here on out!