Cushing's Info

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com ) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

Cushing's syndrome, also known as hypercortisolism or hyperadrenocorticism, is an endocrine disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol (in the blood) from a variety of causes, including primary pituitary adenoma (known as Cushing's disease), primary adrenal hyperplasia or neoplasia, ectopic ACTH production (e.g., from a small cell lung cancer), and iatrogenic (steroid use). It is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. Cushing's was discovered by American physician, surgeon and endocrinologist Harvey Cushing (1869-1939) and reported by him in 1932.

Jackie (samsmom) first started dealing with Cushing's in her family when her youngest child was born in 1999.

Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.
Download from amazon.com: Mystery Diagnosis

Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.

Robin (staticnrg) wrote in her blog, survive the journey...

The Power of Online Communities and Support Groups

I witnessed a miracle today. I can't even tell you much about it because it isn't my information to share without permission from the parties involved. I can tell you it is something that would never have happened without the loving, caring, EMPOWERED support of an online community on the Cushing's Help message boards.

You see, people got involved. Real people. People who know the illness, who know the doctors, who know where to turn for help. These folks are empowered on their own, but man, when they come together and work together, miracles are wrought. There is no way a doctor-centered site can give the information and resources the Cushing's community gives. It's simply impossible to do that for everything about which any one site tries to give information.