Another Day in the Life of a Train Wreck: I had to change my blog ...
By Gracie
I put this blog up to help others with Cushing's and for family and friends to be able to catch up with what's going on. I had an insensitive jerk post on my last blog post that I still look enormous and I should eat more cake, blah, ...
Another Day in the Life of a Train Wreck - http://adayinthelifeofatrainwreck.blogspot.com/
Legend of Bagger Vance, the » information on cushings disease ?
By marcmendez1978
i have been reading a lot about cushings disease and i was just wondering if you have to be obese to have it , i am 5 foot 10 and weigh 170 pounds , i am a bit over weight but not classed as obese . i have most of the other symptoms( ...
Legend of Bagger Vance, the - http://legendofbaggervancethe.gpscomparisons.org/
Cushing's & Cancer: A cry for health care reform
By MaryO
Because I had very little support for my symptoms, diagnosis and surgery, I decided to try to make things a little better for other patients and started a support site called Cushing's Help and Support in 2000. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/
Cushing's support group in Sydney « An adventure in Cushing's and ...
By jennnigan
If you're in Sydney, have been affected by Cushing's, and would like to come along, you're more than welcome to do so! Please send me an email at jennigan[at]gmail[dot]com if you'd like the details. ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/
October 29 at 9:00PM eastern, Interview with Laura (LauraNG)
This interview will take place at 9:00 PM eastern - please note later time!
Laura has been struggling since 2007 with various odd things happening to her body.
In March of 2009 she was diagnosed with Hashimoto's Disease and Hypothyroid.
Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety - stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising).
In responding to the email confirming this interview Laura wrote:
"When I started reading the bio's of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don't know if I have Cushing's but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me."
Read Laura's entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68
You can listen live at http://www.blogtalkradio.com/CushingsHelp The archives are usually up about 30 minutes after the end of the show and in our podcast area of iTunes by Friday.
The Call-In number for questions or comments is (646) 200-0162.
I did not know Bonny personally but she was an Australian member of the Cushing's Help message boards who rarely posted.
She was only 45 at the time of her death October 12, 2009. I've known far too many Cushies who have died far too young from this disease.
Bonnie's Avatar
Bonny wrote July 1, 2009
I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.
Now two and a half years on, I have a second tumour... on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don't know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!
All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.
As a single parent, (divorced), life is very hard with Cushings as you don't have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.
Before and after Cushing's pictures.
Rest in peace, Bonny!
Beth said it best on Facebook
I've started yet another blog to go with the Cushie Info website.
From time to time, I'll be posting topics for discussion/debate there and your comments are welcome. On the right side of this blog is a little comment area so you can see the last 5 comments and/or questions. If by some magic there are a lot of comments, I'll make that more than 5.
Just click on the Jump To link to participate in the debate! Thanks.
Oh, and by the way - the newest blog is here: http://www.cushie.info/blog/
Ami found this older abstract from last year. Please, if you think you have Cushing's - or any serious disease - advocate for yourself before it's too late. Over the years, too many Cushies have died. It's time to take charge of your life, the only one you will ever have...
Endocrine Abstracts (2008) 15 S58
Cushing’s: the worst case scenario
Viv Thornton-Jones
Churchill Hospital, Oxford, UK.
We present the case of a 40-year-old female who was referred to our Department in 1993, for further management following the diagnosis of Cushing’s disease. She proceeded to a transsphenoidal adenenomatectomy (TSA) which resulted in a biochemical cure.
In 1998 she presented with recurrence of Cushing’s Disease, which was managed by a 2nd TSA followed by external beam irradiation.
Bilateral adrenalectomy followed a year later, due to the inability to control her disease.
In 2001 she presented with Nelson’s Syndrome managed by a 3rd TSA followed this time with Gamma Knife surgery.
In 2004 she presented with manifestations consistent with recurrence of Nelson’s Syndrome and proceeded to a 4th TSA. Despite the risk of blindness, the patient agreed to a second course of Gamma Knife treatment for the possibility of tumour control.
Over the next 2 years her clinical picture deteriorated, resulting in a right partial ptosis and a sixth nerve palsy.
She was referred to an Oncologist who offered her Chemotherapy, but she refused treatment.
The patient was then in the care of the Palliative Care Team and she died peacefully at home in 2006.
Endocrine Abstracts (2008) 15 S58
From http://www.endocrine-abstracts.org/ea/0015/ea0015S58.htmFrugal Antics of a Harried Homemaker: 13 Challenges to Having a ...
By Kristen
By the time all of the tests were done, including a tortuous 5 hour blood test, the specialists said his pituitary gland was the size of a pea. The minimum level of growth hormone considered healthy was 10, he was putting out .5. ...
Frugal Antics of a Harried Homemaker - http://wiseanticsoflife.blogspot.com/
Miss Diagnosis: Weight Loss
By Hi, I'm Rene
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/
Repros Reports Androxal Restores Normal Sperm Counts While ...
Secondary hypogonadism is a deficiency state in which the male hormone testosterone goes below the normal range, even in aging men, due to inadequate stimulation of the testes by the pituitary. The study was designed to compare Androxal ...
Drugs.com - Clinical Trials - http://www.drugs.com/clinical_trials.html
The True Cause Of Depression
Psychology Today (blog)
Depression due to an underlying medical disorder like Cushing's disease or hypothyroidism. Endogenous (or chemical) depression to denote depression that ...
See all stories on this topic
Five days to go until the Great Race! « An adventure in Cushing's ...
By jennnigan
An adventure in Cushing's and stroke. Jen's story. About · Photos: Cushing's · Photos: The stroke · The Cushing's · The Stroke · With thanks · With thanks 2. Posted by: jennnigan | October 5, 2009 ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/
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/
Cushing's support group in Sydney « An adventure in Cushing's and ...
By jennnigan
Cushing's support group in Sydney. I'm starting a support group for Cushies in Sydney. I'm “borrowing” the format from my book club – we'll meet once a month over coffee and have a chat about anything, but the topics are likely to be ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/
Who benefits from private health insurance? « An adventure in ...
By jennnigan
Jen Li is a geographer who was diagnosed with Cushing's Disease last October, and had a stroke five days after surgery to remove a pituitary tumour. She has spent more time than she wanted to in the health system as a patient, ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/
Cushing's Family
By judycolby
Last night I met a gal from the Cushing's support board. Her 16 yo son is having surgery tomorrow. It's always nice to meet people from the boards. In fact I have met four this trip. I'm not sure if I've mentioned that I met Steph & her ...
Cushing's Family - http://judcol.blogspot.com/
Fat or Cushing's Syndrome?: Am I in Charge of my Diagnosis?
By Lisa
I feel like I have been trying to PROVE that I have Cushings Syndrome or something other than I have just gotten huge and disgusting... I wonder if I have heard nothing about the results then it must mean that I am fine. ...
Fat or Cushing's Syndrome? - http://fatorcushings.blogspot.com/
In This Issue
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
Help Keep The Cushing's Sites Going
Media: Battle goes south of the border
Major Complications of Obesity and Their Causes
Abstract: Two Year Follow-Up Of 32 Nonfunctional Benign Adrenal Incidentalomas
Endo News: Study Provides Documentation That Tumor "Stem-like Cells" Exist In Benign Tumors
Endo News: Hair Analysis Provides a Historical Record of Cortisol Levels in Cushing's Syndrome
Endo News: Grass-roots voices speak up on health care
Endo News: (Adrenal) UHCG surgeons taught rare surgical procedure
Endo News: Mental illness - it's not all in your head
Patients First: Twitter Transcript
Cushing's or Syndrome X?
New and Updated Helpful Doctors
It's Our Birthday!
It's unbelievable but the idea for Cushing's Help and Support arrived 9 years ago tonight. I was talking with my dear friend Alice, who runs a wonderful menopause site called 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 and we decided that I could.
The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!
The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.
Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
Cushing's Family
By judycolby
I have seen this list before but tonight when I saw it posted on the Cushing's board I thought I should include it here. I need to study it and have the kids study it also. There is so much to learn after having the adrenals removed. ...
Cushing's Family - http://judcol.blogspot.com/
fealubryne: The State of Things
By FealuBryne
Around 1pm I went in for a doctor visit, and my fears were pretty much confirmed; he agrees, it looks like I'm gonna be one of those cases of Cushing's where it reoccurs a few years after the surgery. It's been almost exactly three ...
I Am Nobody - http://fealubryne.livejournal.com/
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
General Tips: Have an appointment with the doctor? Tips show what to ask
Help Keep The Cushing's Sites Going
Froedtert, medical college open specialty clinic
Pituitary Gland Tumor: Symptoms of Pituitary Adenoma
Guess some endos aren't happy, either! Biopsy of adrenal masses
A bit of humor: You know you're chronically ill when you...
Endo News: Accidental death verdict on 40-year-old mum
Endo News: Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease
Endo News: Bleaching is alive and well in sunny Jamaica
Endo News: Chemicals and Endocrine Problems
Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
Robin (staticnrg) submitted an abstract to Medicine 2.0. Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.
This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).
An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.
This year's conference will be held in Toronto, Canada and will be attended by
'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
New and Updated Helpful Doctors
• Stephanie Shaw, M.D. (Round Rock, TX)
• Todd Darmondy, M.D. (Fort Lauderdale, FL)
• Adam Maass, M.D. (Rogers, AR)
• Andrew D. Scrogin, MD, (Macomb, MI) 
Daniel Kelly, MD (Santa Monica, CA)
New and Updated Helpful Doctors
New and Updated Bios
Please note that new and updated bios submitted after July 7 have not yet been formatted for the site. They are being done in turn and will show up here in the next few days. Add or Update your bio here
Names in parens are user names on the message boards
New Bio July 6, 2009
Shon (Shon) is from El Reno, Oklahoma. Two months before her 31st birthday, she was diagnosed with diabetes. She has many Cushing's symptoms and will test for Cushing's in early August.
New Bio July 2, 2009
Shirley (Shirley) is from Tauranga, New Zealand. She has pituitary surgery in August 2008 after years of illness, weight gain, depression, etc. She is off all meds bus is still tired and sore.
Updated Bio July 2, 2009
Cynthia (cmo) is from San Francisco, CA. She updated her bio in May 2009 after an MRI showed a pituitary tumor. She was finally diagnosed with ACTH Dependent Cyclical Cushing's after all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio July 1, 2009
Amber (AmberP) is from Martinsburg, West Virginia. Several doctors have told her that she most likely has Cushing's but after testing say she has PCOS. She has taken meds for PCOS and doesn't feel any better so she is still testing for Cushing's. She has has many symptoms for at least 15 years.
New Bio June 29, 2009
Dina (Dina G) is from Newington, Connecticut. She was diagnosed with Cushing's in November 2008 and just had pituitary tumor removed on June 3rd 2009. She is weaning off steroids now.
New Bio June 29, 2009
Melissa (Melissa G) is from Evans, New York. She is not yet diagnosed with Cushing's but has many symptoms. She has an appointment with an endocrinologist on July 29 and she is undergoing more testing.
New Bio June 29, 2009
Angela (AngelaK) is from Howell, Michigan. She had gastric bypass surgery in December 2006. As more symptoms showed up her PCP treated them individually. A recent MRI shows a pituitary tumor and she is consultation with a neurosurgeon at the University of Michigan who only does pituitary operations (2000+).
New Bio June 28, 2009
Aly (Aly H) is from Poughquag, New York. She has been dealing with Cushing's for the past 4 years and has seen at least 10 different doctors. She recently had her Petrosal Sinus Sampling and hopes to have pituitary surgery soon.
New Bio June 27, 2009
Katie is from St Augustine, Florida. She is not yet diagnosed with Cushing's but has many symptoms. her cortisol level is elevated and she is undergoing more testing.
New Bio June 26, 2009
Beth (bounceback01) is from Lexington, Kentucky. She is not yet diagnosed but her endo is pretty sure she has Cushing's and they're discussion treatment options.
New Bio June 24, 2009
Robert (Robert) is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
New Bio June 22, 2009
Leah (cushiemom4) is from Goodlettsville, Tennessee. She had adrenal surgery August 8, 2009 and is now pregnant. She was diagnosed partly due to Mystery Diagnosis.
• Pituitary Disorders: An Interactive Forum (Los Angeles, CA) July 8, 2009. More info here.
• Pituitary Patient Education Day (Seattle, WA) July 10, 2009. More info here.
• Patient Support Group Santa Monica, CA, Wednesday July 14, 2009 More info here.
• Salt Lake City Area Cushie Dinner West Jordan, UT, Tuesday July 21, 2009 More info here.
• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O'Connor (MaryO) and Dr Ted Friedman were accepted as panelists but will not attend. The topic was "Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0".
• Cushie Get Together 2009 Columbus, OH, Saturday, September 26, 2009 More info here.
• Patient Support Group Santa Monica, CA, Wednesday November 10, 2009 More info here.
• Magic Foundation Conference, including Cushing's and Growth Hormone Issues, June 11-13, 2010 in Chicago, IL. More info here.
• Endo 2010 (San Diego, CA) June 19-22, 2010. More info here.
• ENDO 2011 (Boston, MA) June 4 - 7, 2011. More info here.
• Cushie Convention 2011 (Winnipeg, MB, Canada, or St. Louis, MO, USA) November 18, 2011 to November 20, 2011. More info here.
• ENDO 2012 (Houston, TX) June 23 - 26, 2012. More info as it becomes available.
• ENDO 2013 (San Francisco, CA) June 15 - 18, 2013. More info as it becomes available.
• ENDO 2014 (Chicago, IL) June 21 - 24, 2014. More info as it becomes available.
• ENDO 2015 (San Diego, CA) June 20 - 23, 2015. More info as it becomes available.
• ENDO 2016 (Boston, MA) June 4 - 7, 2016. More info as it becomes available.
•Discussions about other upcoming meetings on the message boards: Meetings, events and information.
Froedtert, medical college open specialty clinic
Triangle Business Journal - Raleigh,NC,USA
Both physicians treat medical conditions including adrenal and pituitary gland disorders, cholesterol and lipid issues, Cushing's disease, diabetes, ...
Mother of Confusion: A mother of a birth story (part 1)
Sacramento Bee - Sacramento,CA,USA
Another said, after ruling out Cushing's disease, it was the worst case of PCOS she'd ever seen. The syndrome did more than clump my eggs and prevent ...
...have a pajama collection.
...call the pharmacist and she recognizes your voice before you tell her what it is.
...are psyched to get a computer table tray for sitting in bed as a gift.
...find out that you can order a three month supply of meds online and you think it's great.
...share and discuss journal articles with your doctor.
...have an inbox full of emails all from people with your disease or related to your disease.
...get updates from MedScape.
...set up your pills a month ahead of time in pill holders.
...have pill stashes in your car, purse, backpack, etc.
MaryO'Updates:
...have Dr F, Dr L and/or Dr IMMC on speed dial.
...bought a case of sharps containers on eBay.
...have a hospital bag always ready to go.
...have a "Got Hump" tattoo
...share pictures online of your stretch marks like they were badges of honor
...you know why there's a zebra in my avatar
Added by Facebook friends:
...know approximately how much your urine output is in mL's before you go because you've measured it so often before.
...When a specialists at a leading university hospital tells you "you are too complicated".
...when multiple specialists at multiple leading hospitals tell you your case is complicated! (had to add to that!)
...when you only know the day of the week by your pill container!!
...when you get to park in the handicap spots and you're only 25 years old!!
...you know to tell the person who's drawing your blood to ice and centrofuge your vile for the ACTH test!!
...you can't make plans beyond the next hour because you don't know how sick you'll feel!!
...when the most excitement you've had in a month is your drs appt! And you're looking forward to your next appt so you can get out of the house!!
...When the people who work in the lab great you like Norm on Cheers when you arrive.
...When you know which vein is the "sweet vein."
Feel free to add your own! :)
This was from http://addisonssupport.blogspot.com/2009/07/you-know-youre-chronically-ill-when-you.html but has been edited to be meaningful to Cushies
...have a pajama collection.
...call the pharmacist and she recognizes your voice before you tell her what it is.
...are psyched to get a computer table tray for sitting in bed as a gift.
...find out that you can order a three month supply of meds online and you think it's great.
...share and discuss journal articles with your doctor.
...have an inbox full of emails all from people with your disease or related to your disease.
...get updates from MedScape.
...set up your pills a month ahead of time in pill holders.
...have pill stashes in your car, purse, backpack, etc.
...have Dr F, Dr L and/or Dr IMMC on speed dial.
...bought a case of sharps containers on eBay.
...have a hospital bag always ready to go.
...have a "Got Hump" tattoo
...share pictures online of your stretch marks like they were badges of honor
...you know why there's a zebra in my avatar
Feel free to add your own! :)
This was from http://addisonssupport.blogspot.com/2009/07/you-know-youre-chronically-ill-when-you.html but has been edited to be meaningful to Cushies
Cushing's Moxie: The Home of Strange Symptoms: CUSHING'S: For the ...
By Cushie Melissa
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to ...
Cushing's Moxie: The Home of... - http://cushingsmoxie.blogspot.com/
Robin (staticnrg) submitted an abstract to Medicine 2.0. Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.
This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).
An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.
This year's conference will be held in Toronto, Canada and will be attended by
Robin's abstract was submitted and accepted! WooHoo!
'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.
Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.
Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.
The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.
From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.
One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.
Living with Cushing's Disease: Not the way I thought the ...
By StacyLeigh
She had 2 in mind, one had more experience with Cushing's patients than the other but she assured me that they were both great. Dr Chik told me to continue taking my medication as I had before and that she would be in touch.... and with ...
Living with Cushing's Disease - http://stacyjourney.blogspot.com/
Steve's Weight Loss Seminar | Cooking For All Ages
By admin
June 17th, 2009 at 11:22 am. YOu don't need excess calories in every situtaion ot become obese. Cushing's Syndrome can make you very obese with absolutely zero excess calories. Of course Cushing's Syndrome is very rare. ...
Cooking For All Ages - http://cooking.ixltrainingbooks.com/
Cushing's Family
By judycolby
Tonight Jess said that maybe there are hormones off and it's like being pregnant and having morning sickness. Could be something to that. There does seem to be a lot of similarities between Cushing's and pregnancy. ...
Cushing's Family - http://judcol.blogspot.com/
YOU’RE INVITED!!
What: Seattle Pituitary Center Patient Education Day
Who: Patients, families and friends and anyone else who want to learn more about pituitary disorders
When: Friday, July 10, 2009
Time: 9:00 – 4:30 p.m. (registration opens at 8:15 a.m.)
Where: Swedish Cherry Hill Campus, Education and Conference Center
Cost: No charge; Continental breakfast and lunch will be provided.
Hear from patients who will share their personal experiences living with a pituitary disorder, and chat with other patients and families in breakout discussion sessions.
Agenda topics include:
· Overview of pituitary disorders
· Overview of acromegaly
· Psychological aspects of living with a pituitary disease
· Pituitary hormone replacement
· Cushing’s syndrome
· Surgical and radiation treatment options for pituitary tumors
RSVP: Register online or call 206-386-2502.
Sagacious babe plumps for esteem
Brisbane Times - Brisbane,Queensland,Australia
My saggy boobs and stretch marks are from Cushing's disease, a disease that makes your ... I had surgery to fix Cushing's, and had a stroke five days later. ...
Cushing's Moxie: Melissa's Battle with Cushing's Disease: I LOVE ...
By Cushie Melissa
Raising a baby while having Cushing's has been rough on Jonathan and me. I do as much as I can, but he picks up the slack, after working his 40+ hours. He has been wonderful to Elena and me. Through this experience, we have grown closer ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/
Cushing's Moxie: Melissa's Battle with Cushing's Disease: A LETTER ...
By Cushie Melissa
Although I have made many transitions in the past few years (career to no career, single to married, 1st home to 2nd home, childless to mother, healthy to sick), I have really struggled with one aspect of Cushing's disease. ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/
Cushing's Moxie: Melissa's Battle with Cushing's Disease: A Letter ...
By Cushie Melissa
The best I could do is to include a letter from Kate, a dear friend who has Cushing's, advocates for Cushing's awareness and has been a wonderful leader for all of us Cushies. She had the courage to capture a different side of the ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/
Cushing's Support Group Meetup Uptown Espresso & Bakery
This group is for patients and survivors of Cushing's and is a place where patients can partner up with survivors of Cushing's to gain an inside perspective ...
Theodore Friedman - Good Hormone Health - DoctorFinders.com
He gave an interview on the clinical symptoms and signs of Cushing's disease, including weight gain and body reshaping. Theodore C. Friedman, MD, PhD specializes in treating patients with adrenal, pituitary, thyroid, ...
DoctorFinders Latest Members - http://doctorfinders.com/
And Sharm's TV appearance again:
Misdiagnosis of Cushing's Blamed on Fat « Big Liberty
By bigliberty
I'm not sure if anyone in the Fatosphere has brought this up before, but I was watching episodes of TLC's Mystery Diagnosis for the first time, and came across an episode where a woman with Cushings is ignored for years, because one of ...
Big Liberty - http://biglibertyblog.com/
Simple Diabetic Diet - I had Cushing's syndrome (high cortisol ...
By Simple Diabetic Diet
I had Cushing's syndrome (high cortisol levels) and now my symptoms seem to be diabetic? [info] simplediabetic: June 5th, 8:04. (My Original Blog Post: http://ping.fm/JIAuv). I read that high levels of cortisol can damage the pancreas ...
Simple Diabetic Diet - http://simplediabetic.livejournal.com/
It's Official... High Insulin - Low Carb Friends
By Maryposa
My CO2 is low which, if I DO have high cortisol (the symptoms match up the most of all concerns) together that would indicate Cushing's syndrome? My previous doctor said he was worried that I have that but some preliminary result was ...
Low Carb Friends - http://www.lowcarbfriends.com/bbs/
In This Issue
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
Media: Free Online Book: Management Of Pituitary Tumors
Help Keep The Cushing's Sites Going
Endo News: Neurosurgery Update ~ Minimally Invasive Brain Tumor Removal
Endo News: Bilateral Adrenalectomy for Refractory Cushing Disease: A Safe and Definitive Therapy
Endo News: Predisposing Factors for Adrenal Insufficiency
Endo News: New institute will study rare diseases
Endo News: Hypercoagulable state in Cushing's syndrome: a systematic review.
Endo News: (Cushing's and Adrenal Cancer) Hope dies last
Share Your Cushing's Symptoms on a New Site
What can I do about my stretch marks?
New and Updated Helpful Doctors
• Todd Darmondy, M.D. (Fort Lauderdale, FL)
• Adam Maass, M.D. (Rogers, AR)
• Andrew D. Scrogin, MD, (Macomb, MI) Daniel Kelly, MD (Santa Monica, CA)
• Wisconsin (2 new doctors)
New and Updated Helpful Doctors
New and Updated Bios
New Bio June 1, 2009
Jessa (Jessa) is from Bathurst, St. John, Canada. She is not yet diagnosed with Cushing's but has many sumptoms. Her cortisol level is now at 4200. She is waiting for a catscan to check for a pituitary tumor.
New Bio May 31, 2009
Lory (Lor) is from Minnesota. She was diagnosed with pituitary Cushing's in May of 2009. She had symptoms for two years.
New Bio May 29, 2009
Lynn (Lynn) is from Bend (OR). Lynn had a left adrenalectomy in 2000. In 2004 Lynn had a Thyroidectomy due to tumor which was malignant on the biopsy, yet benign at surgery. In May 2009 she learned she had a 3mm anterior pituitary tumor. She is a patient of Dr Ted Friedman. Lynn will be a guest in a Live Interview in the Cushings Help Voice Chat / Podcast series.
Updated Bio May 29, 2009
Cynthia (cmo) is from San Francisco, CA. She updated her bio in May 2009 after an MRi showed a pituitary tumor. She has an inferior sinus sampling set up for early June to see if the tumor is really there and is the cause of all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio May 29, 2009
Fiona is from Lydford, UK. She was first diagnosed in 1990 after a year of tests and years of symptoms. About 3 or 4 years ago her symptoms started returning. It appears that she has a recurrence after 18 years.
New Bio May 27, 2009
Naira (nairav323) is from Montebello, California. She has just been diagnosed with PCOS and is waiting to find out if she has Cushing's.
New Bio May 27, 2009
Evin (Evin) is from Twin Falls, Idaho. She recently saw a rheumatologist who things she has Cushing's from an adrenal gland tumor. She has many Cushing's symptoms and is trying some self help therapies.
New Bio May 22, 2009
Cindy is from New Port Richey, Florida. She was first diagnosed with Cushing's disease in January 2002. She had a recurrence and second transphenoidal surgery in February 2006. She has another recurrence and is thinking about a BLA.
New Bio May 21, 2009
Dee (DeeO) is from Australia. Her daughter has a prolactinoma and Dee is wondering if she could have Cushing's.
New Bio May 21, 2009
Dara (Arkham69) is from Limerick, Ireland. She is recently diagnosed with Cushing's and also has fibromyalgia.
