Tuesday, September 29, 2009

An NIH survey about health stuff. Fill it out if you have a minute :) http://ow.ly/rEkt

Sunday, September 27, 2009

We're Doing Great Things! The Power of Online Communities and Support Groups

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.

Friday, September 25, 2009

4 new and updated Cushing's bios added. dx include 2 pituitary, 2 undiagnosed http://ow.ly/r4xL
New Cushing's Helpful Doctor added in North Carolina http://ow.ly/r4qo
Cushing's locations page updated, 3 new people added. http://ow.ly/r4ku

Wednesday, September 23, 2009

Cushing's Blog Alert

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/

Cushing’s Blog Posts ~ 9/23/2009

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/

Tuesday, September 22, 2009

Thanks so much, Robin! RT @staticnrg: @cushings Happy Birthday!!!!! W00t!!!!!!!
Thanks so much, Jess! :) RT @llama3234: @Cushings HAPPY BIRTHDAY!! HOPE IT'S GREAT!

Saturday, September 19, 2009

RT @staticnrg: @kevinmd http://ping.fm/snhU2 (worth a read)

Cushing's Blog Alert ~ 9/19/2009

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/

Friday, September 18, 2009

Thanks! I try :) RT Get2BJ: @cushings Liking the look of the new site, very easy on the eye!
New for members of http://www.cushie.info! Track health & fitness stats. Achieve your goals, print charts for doctors. Add your own items.
You bet! Thanks! RT @staticnrg: RT @ekivemark: #med2 Patients value unedited, uncensored and non-statistical infor <==Yes! ( @cushings )
Jon's pituitary interview from last night available on Cushie Chats Podcast (iTunes) and online at http://ow.ly/pZX5 OR http://ow.ly/pZYl

Thursday, September 17, 2009

@staticnrg Thanks for being there! It's always better when you are :)
Archives will be available after the interview at http://ping.fm/sT29f and iniTunes
Read Jon's bio at http://ping.fm/evEDd
Tonight! in 30 minutes Cushing's Interview with Jon, pituitary patient. Listen http://ping.fm/9Kr2e

Cushing's Blog Alerts ~ 9/17/09

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/

Wednesday, September 16, 2009

RT @rilescat: Please help to build the Health Care Social Media List...put a link on your blog or site: http://ow.ly/pKhm
RT @invisibleillwk: Effectively communicate your illness & #pain #iiwk09 seminar Karen Lee Richards 9/17 530PM http://ow.ly/pcHm
Thurs, 7:30PM EST Cushing's Interview with Jon, pituitary patient. Listen at http://ping.fm/oZmFO Call-in 646-200-0162

Cushing's Help Newsletter, September 16, 2009

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

In Memory: Leader of OSU campus ministry dies at 49

Want to Volunteer?

Help Keep The Cushing's Sites Going

Adrenal Glands

Now I know what it feels like to have a gun held to my own head: Ameera MacIntyre's battle with a brain tumour

Addison's CD

Pituitary Awareness Week

Endo News: From isolated growth hormone deficiency to multiple pituitary hormone deficiency: an evolving continuum. A KIMS analysis

Endo News: Disordered and Increased Adrenocorticotropin Secretion with Diminished Adrenocorticotropin Potency in Obese in Premenopausal Women

Endo News: Hypercoagulable State in Cushing’s Syndrome: A Systematic Review

Endo News: Diminished and irregular thyrotropin secretion with delayed acrophase in patients with Cushing’s syndrome

Endo News: Growth hormone replacement in adults: interactions with other pituitary hormone deficiencies and replacement therapies

Endo News: Temozolomide treatment of a pituitary carcinoma and two pituitary macroadenomas resistant to conventional therapy

A young writer with much to say

Endocrine Diseases

New and Updated Helpful Doctors

New and Updated Bios

Tuesday, September 15, 2009

RT @staticnrg: Is Cushing's an invisible illness?? You bet: #iiwk09 #invisibleillness #cushings http://ow.ly/pyY6

National Invisible Chronic Illness Awareness Week

alt

Any Cushies on this Diabetes Board who can help?

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)....

Diabetes Forums - http://www.diabetesforums.com/forum/

Monday, September 14, 2009

RT @accarmichael: Awesome Amy Tenderich talk: pts use networks for information, emotional support, advocacy.Also decision support! #txfm09

Sunday, September 13, 2009

Who helped you learn Twitter? Tweet their @username & add #TwitterHelper http://j.mp/15OPg0 - @staticnrg convinced me to try it.
RT staticnrg: Growth Hormone for Survival: It's not always controversial http://ping.fm/ITjla

Saturday, September 12, 2009

RT @MollyDugganLLC: Womens Health: Calendar of Events Date: September 2009 October 2009 Novemb http://bit.ly/6qUA2 Full http://bit.ly/Vvj5h
Did you know you could *listen* to Cushing's posts at http://ping.fm/KgbKT ? Info is read aloud at the click of a button!
Several studies have suggested that the prevalence of Cushing's syndrome is higher than previously thought. http://ow.ly/p6iZ
Cushing's locations page updated, 4 new people added. http://ow.ly/p6cE
4 new and updated Cushing's bios added. dx include 2 pituitary, 1 undiagnosed, 1 steroid-induced http://ow.ly/p69G
Have you found www.cushings-help.com website? Also, message/support boards there? http://ping.fm/3I9Bl

Thursday, September 10, 2009

11 new Cushing's symptoms photos added September 10, 2009 http://ow.ly/oUUc
I've had the petrosal sinus sampling and lots on the message boards have! http://ow.ly/oUTn
Petrosal sinus sampling? Lots have! RT stillenuf: Anyone had the cavernous & p? where they go in both sides of groin.. to determine cushings
Please join us! RT @staticnrg: @cushingsfriend Have you discovered http://ping.fm/aQlsY I hope you'll join us there.

Wednesday, September 9, 2009

England: Support for pituitary sufferers

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

From http://www.greatyarmouthmercury.co.uk/content/yarmouthmercury/news/story.aspx?brand=GYMOnline&category=news&tBrand=GYMonline&tCategory=news&itemid=NOED09%20Sep%202009%2009%3A54%3A07%3A840

Saturday, September 5, 2009

@cushingsfriend I hope so, too! I think he'd learn a lot and meet others. That's the best, meeting others in same boat.

Thursday, September 3, 2009

Johns Hopkins First Annual Pituitary Tumor Center Patient Education Day

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.

Wednesday, September 2, 2009

6 new Cushing's bios added. 1 adrenal, 4 pituitary, 1 undiagnosed http://ping.fm/Ivul8
6 new Cushie locations added. http://ow.ly/nOgk

Cushing’s Blog Alerts, September 2, 2009

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/

Lots of us with Cushing's! RT DupontDan: Why do the docs on house always think the patient has cushings...? Does anyone actually get those?