Robin, thanks for sharing this - I'm so impressed by what you wrote and by what the people on the message boards banded together and did for a fellow Cushie. A stark contrast to what someone recently said - we were "only an internet forum".
I was so amazed at how our community was able to mobilize and get something done.
Thanks again for posting this, Robin!
Robin (staticnrg) writes 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.
The body of knowledge that our support group has and shares with each other is so abundant with not one, not ten, but hundreds (maybe thousands) of caring, knowledgeable folks who read and share research, share what the good doctors have told them, and share who these good doctors are, we together know the symptoms/signs of every facet of these incredibly complex endocrine disease even better than the doctors do (with the exception of a very few).
We know the new trials, the new research, the new methods before most doctors. We know what has worked and what hasn't. We know the side effects, the bad that goes with the good in treatment, and what the options are. We know that if we need to know something, we can post it and someone will know someone who knows. In other words, there is no way one site CAN do what any of the wonderful communities like the Cushing's Help site do. Never. I can't put it all on my blog, no matter how hard I try. But if 100's of us (1000's, actually, of us) post on one site, we CAN be effective. It's the nature of what works. That's the model which works.
I hope I can tell you about this miracle someday soon. I want you to be as blessed as I am with it. This is the hope for the future of empowered e-patients--not doctor-driven, encyclopedic sites, but community-centered, real-patient sites.
Gitz: HDG: It's the Little Things
By gitz
And I wasn't so deluded that I thought I would wake up the next day, magically having lost all of this Cushing's weight, and no longer resemble a woman named Big Bertha. I thought I was being pretty realistic. But somewhere, deep down, ...
Gitz - http://gitzengirl.blogspot.com/
Adrenal Disorders - Cushing's Syndrome
EmpowHer - Phoenix,AZ,USA
When your body produces too much cortisol, it may lead to Cushing's syndrome. Cortisol is a hormone that the body can produce naturally or cortisol can be ...
Cushing's Family
By judycolby
Subscribe to: Post Comments (Atom). Life with two kids and a husband who all have Cushing's. Jess, Judy, Justin. "you did what you knew to do at the time. when you knew better, you did better." Maya Angelou ...
Cushing's Family - http://judcol.blogspot.com/
Endocrine Journal Club: New Cushing's guidelines
By Dr. Wei-An Andy Lee
Cushing's syndrome remains one of the most challenging endocrine pathologies. Most clinical features overlap with those of common diseases found in the general population, and some patients have an atypical clinical presentation with ...
Endocrine Journal Club - http://endojournalclub.blogspot.com/
Living with Cushing's Disease: "You are so strong...."
By StacyLeigh
Living with Cushing's Disease. Friday, September 18, 2009. "You are so strong...." I love it when people tell me this. It reminds me of how I have overcome so much at a fairly young age... I mean how many 24 years olds can say that they ...
Living with Cushing's Disease - http://stacyjourney.blogspot.com/
How To Check Body Weight | Bukisa.com
By mkings
Certain illnesses, such as Cushing's syndrome or hypothyroidism, and medications, such as glucocorticoids, can also cause obesity. However, less than one percent of all obese patients have an identifiable secondary cause of obesity. ...
Latest content from Bukisa.com - http://www.bukisa.com/
Cushie Blogger
By MaryO
30 Things About My Invisible Illness You May Not Know: - *I have "met" alot of "Cushing's Buddies" and other people that have suffered through what I have or are going through what I have and they have been a GRE... 6 hours ago ...
Cushie Blogger - http://cushie-blogger.blogspot.com/
Living with Cushing's Disease: 30 Things About My Invisible ...
By StacyLeigh
I have "met" alot of "Cushing's Buddies" and other people that have suffered through what I have or are going through what I have and they have been a GREAT support! One of my "Buddies" had posted this and I "stole" it from her.... ...
Living with Cushing's Disease - http://stacyjourney.blogspot.com/
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
In Memory: Leader of OSU campus ministry dies at 49
Help Keep The Cushing's Sites Going
Endo News: Hypercoagulable State in Cushing’s Syndrome: A Systematic Review
A young writer with much to say
Cushing's Disease/Syndrome - Diabetes Forums
By GrnMtGirl
...A short time ago, my sister was doing some online research and came across Cushing's Disease/syndrome which is a disease that happens because the body is making too much cortisol. So, I asked my doctor to check my cortisol levels, which turned out to be high and she sent me to an endo (finally). Today, I got an indication that I may indeed have cushing's (more tests required, of course). If this is the case and I am able to be treated properly there is a chance that the diagnosis of diabetes and/or the diabetes itself will go away because the cortisol won't be controlling my other hormones (insulin)....
FOR most people diagnosed with pituitary disorders, the condition is initially something of a mystery.
Symptoms develop over time and may go unnoticed for a number of years.
Helping to unravel the medical mysteries are specialist nurses Sondra Gorick and Kathy Powell, whose work in the Clinical Investigation Unit at NNUH is key to diagnosing and monitoring pituitary disorders.
Now Sondra and Kathy are re-launching a local support group for pituitary patients sponsored by the Pituitary Foundation, a national charity, and helped by Tony Denton, a volunteer at NNUH who is also a patient.
"The pituitary is like the conductor of the orchestra - it controls all the other glands in the body such as the thyroid, adrenal glands, ovaries and testes," Sondra explains.
"A large part of our work is to reassure patients who suffer symptoms that can be extremely distressing. For instance, acromegaly is a rare condition that affects the growth hormones, causing the patients' features to grow out of all proportion. Once the hormones are controlled, either with drugs or surgery, the appearance can return to normal.
"It's thought that Goliath had this condition - in the bible story he was a giant and David was able to sneak up on him because in acromegaly the peripheral vision is also affected."
Another condition is Cushing's Disease, which is a tumour of the pituitary which makes the adrenal glands produce too much natural steroids. This is a very distressing condition because the patients put on large amounts of weight particularly around their middles. They get very weak muscles, bruise very easily, often develop diabetes and high blood pressure and several other problems.
Most tumours on the pituitary turn out to be benign and some may not require any treatment at all. However, tests and treatments have improved a great deal in recent years and patients can now look forward to longer, healthier lives with much greater control of their symptoms."
The first meeting of the relaunched support group for pituitary patients will take place 16th September in Benjamin Gooch Hall within the Teaching Centre at NNUH, from 7 pm. It's hoped that the group will meet on a three-monthly basis.
Sondra - who was recently nominated for a "Patient Choice" award in the 2009 Norfolk and Norwich University Hospital Staff Awards - is pledging her support for the Pituitary Foundation by holding a sponsored "green hair day" at NNUH on her 50th birthday, 24 November.
If you would like to know more about the Norwich pituitary support group, call Sondra Gorick or Kathy Powell on 01603 286360 or Tony Denton on 01953 605534
Saturday, September 26, 2009
9:30 a.m. Registration
10:30 a.m. Presentations
12:00 p.m. Lunch
1:00 p.m. Breakout session with physicians
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
Please R.S.V.P. by September 4, 2009
Joe Bondura (410) 516-6234 or jbondur1@jbmi.edu
Reservations will be taken on a first-come, first-serve basis.
Please reserve early.
One patient, one Guest
Please indicate any special access and/or dietary needs when making your reservation.
Dear Me... ~ Should Have Seen It...
By Steve
***The author, Steven Owens, suffered from Cushing's Disease for a number of years. Years of testing led to brain surgery at MD Anderson Cancer Center, which failed, leading to a complete removal of adrenal glands 20 months later. ...
Should Have Seen It... - http://www.shouldhaveseenit.com/
Daily Improvements: Listening...
By Catherine Hughes
He sent me for an EEG (all normal) to check that my heart wasn't at the root of my fainting/dizzy spells and he also ran a random cortisol blood test which may or may not prove useful as regards a Cushing's diagnosis. ...
Daily Improvements - http://dailyimprovements.blogspot.com/
