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! A Word from the Founder, MaryO...
This original website is getting old - 14 years old is a lifetime on the internet.
I am in the process of updating everything to make it "responsive" and mobile-compliant. This may take forever but please pardon our dust during this transition.
Our Cushing's Family of websites:
- Addison's Disease/Adrenal Insufficiency.
- The message boards at cushings.invisionzone.com
- The CushieWiki
- and several blogs
NEW! We're on
NEW Spreadsheet: Where do your donations to Cushings Help go?
NEW! Cushing's group on empowHER
NEW! Open Cushing's Help Group on LinkedIn. At Cushing's Help Organization.
Donation Tracker on the message boards so that people can easily see how the donations are going and add a one-time donation from that "app".
Success Stories! These will be culled from the bios and posts on the message boards. Personal Information will not be shared without member permission.
A section of "Male-Only" bios. 2007 through 2010 have been done so far. Older pre-2007 adrenal and ectopic bios have been added. Names A through D of the older pituitary bios have been added now.
The Cushing's Boards are finished with a major upgrade and facelift. The forums are optimized for viewing on cellphones.
Daily News Summary at Cushing's Daily News
Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients. If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO). Thank you!
The Cushing's Help Cause
More features coming soon!
This site is provided at no charge by the Cushings Help. for Cushing's patients, friends and family - or anyone who wants to learn more about Cushing's.
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.
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
- Academics (health professionals, social scientists, computer scientists, engineers)
- Software and Web 2.0 application developers
- Consultants, vendors, venture capitalists, business leaders, CIOs
- End-users (health professionals, consumers, payors)
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's 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.
VOICE Chats / Internet Talk Radio
Listen to the first archived interview from Thursday, January 3, 2008 with Mary O'Connor (MaryO), cushings-help.com founder as well as several others. Achived audio is available through the Podcast page of this site, BlogTalkRadio or through iTunes Podcasts
This player will play either the last recorded show or, if the show is currently occurring, you can hear the live show.
Subscribe to the CushingsHelp podcasts on iTunes
New! Podcasts by many message board members. Listen live to archived interviews with MaryO, Brandon, Laura, Jon, Lynn, Gail, Ami, Dr. Ted Friedman (Parts 1 and 2), Melissa (Melissa74), Arubiana, Barbara, Cyndie, Kay, Stacey, SusanM, Dr. Rob, Joselle, Mar, Sheryl, Gracie, Katie, Kate, Charlie, Dr. Dori Middleman, Heather S, Leslie, Jackie and Jordan, Ferol, Kevin, Steve, Jenn, Crystal and Monica, JenS, Karen, Terry, Robin, Alicia, Jayne, Judy and Jess. Recently added: Dr. Jon Weingart, a neurosurgeon at Johns Hopkins, explains the most common types of brain tumors, their treatment and cutting edge research that may help in their treatment.
Upcoming Cushing's Meetings
People are planning Cushing's meetings, lunches and dinners again in several areas of the United States and the UK. If you're close to any of them, why not make plans to attend one or more? If there isn't a meeting near you, why not set up your own? It's always wonderful to meet with other Cushies and trade stories and pictures - and ask lots of questions. Meetings are also lots of fun.
There's nothing like meeting another Cushie! I hope to see you at one of these upcoming meetings!
For more meeting information, please see the Meetings Page.
Spread The Word! Cushing's Pocket Reference
This has been a concern of mine for some time. Your post spurred me on to do something I've been meaning to do. I've designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I've done a front and a back.
Here are the links:
Front: This card is being presented by a person who cares.
Back (The same for everyone)
This Topic on the Message Boards
On the Message Boards
Cushing's Disease, Cushing's Syndrome, Endocrine Disorders, Pituitary Tumor
As Robin posted on digg.com. Please vote for this site!
Cushing's Disease/Syndrome is one of several endocrine disorders hard to diagnose but devastating to the persons who have them.
This site leads to helpful and informative news, research, and doctors for anyone dealing with endocrine disorders or who suspects an endocrine disorder.
There is also a wonderful support board filled with similar people. digg story
Robin writes: Getting "Flakey" in a geeky way, Research, bookmarks, and general info to share
I've been having a lot of fun "flaking"..... I'm exploring the new Web 2.0 technologies which include wiki's, podcasts, newsfeeds, and flakes.....
I've built a flake for Cushing's to share what info I have with anyone who wants to use it. I'm still working on it and have a lot more to add, but I'll do it as I can. A lot of things I've put there point back to this site, and if it's a link to the boards, only board members will be able to see it.
I've put a feed of my bookmarks on the flake site, but I also have another public site for them, too:
The neat thing about all this is you can do this, too, and we can "network", sharing with each other. You can incorporate my stuff in to your flake, and I can incorporate yours. It's a way for us to share info with each other. MaryO may want to put links to all this on here...I don't know. But it's the "new" thang, and predicted to be how things are going.
Who are we?
We are patients who have either been diagnosed or are testing for Cushing's. We do not pretend to be anything else. We just want to share some of the information we have gleaned in hopes it will make others' journeys a bit easier.
The internet is full of resources, ideas, information and research on Cushing's Disease/Syndrome. However, accessing all these resources can be time-consuming. It is our hope that a central guide will enable others to pursue this more quickly and efficiently.
What is Cushing's Disease or Syndrome?
Both Cushing's Disease (CD) and Cushing's Syndrome (CS) are disorders caused by excessive secretion of the adrenal gland hormone cortisol. With CD, the exess cortisol is produced because the pituitary gland has a tumor (adenoma) which produces too much ACTH, which tells the adrenal glands to produce the cortisol. With CS, the adrenal gland(s) have a tumor or tumors (adenoma) which produce too much cortisol. There may also be ectopic sources/tumors with CS which cause the adrenals to produce too much cortisol. Steriod-induced Cushing's is one of the most frequent types of CS.
How can I learn more about Cushing's Disease/Syndrome?
Take the time to go through the information at this site. It includes how to get to the best resource site on the web, Mary O's Cushings Help website at http://www.cushings-help.com. She includes a lot of information in her site, and a message board for you to join and ask questions, share information, and meet others who are doing the same.
Disclaimer: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician.
What is Cushing's?
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.
Normally, cortisol is released from the adrenal glands in response to ACTH being released from the pituitary gland. Both Cushing's syndrome and Cushing's disease are characterized by elevated levels of cortisol in the blood, but the cause of elevated cortisol differs between the two.
- Cushing's disease specifically refers to a tumor in the pituitary gland that stimulates excessive release of cortisol from the adrenal glands by releasing large amounts of ACTH.
- In Cushing's syndrome, ACTH levels will normally drop due to negative feedback from the high levels of cortisol. All forms of Cushing's are correctly called Cushing's Syndrome.
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Cortisol helps maintain blood pressure and cardiovascular function and is responsible for helping the body respond to stress. Many people suffer the symptoms of Cushing's syndrome because they take steroids such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation. Prednisone is well-known for a "bloating" look that it gives people who take it.
Others develop Cushing's syndrome because of overproduction of cortisol by the body due to a tumor on the pituitary (usually an adenoma or benign tumor of the pituitary glands) or adrenal glands, or elsewhere in the body Adrenal cancers, or other adrenal abnormalities may be the cause of Cushing's Syndrome as well.
People who have been diagnosed with depression, alcoholism, malnutrition and panic attacks tend to have higher cortisol levels as well. These types of Cushing's may be called Pseudo-Cushing's.
Symptoms vary, but most people have upper body obesity (central obesity), rounded face ("moon face"), increased fat around the neck and on the back of the neck (buffalo hump), and thinning arms and legs. Children tend to be obese with slowed growth rates.
Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks (striae) may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.
Most people have severe fatigue, weak muscles, persistent hypertension (due to the aldosterone-like effects) and insulin resistance, leading to hyperglycemia (high blood sugars) which can lead to diabetes mellitus. Patients frequently suffer various psychological disturbances, ranging from euphoria to frank psychosis. Depression and anxiety, including panic attacks, are common.
Women usually have excess hair growth (hirsutism) on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop (amenorrhoea). Men have decreased fertility with diminished or absent desire for sex.
Other symptoms include excess sweating, telangiectasia (dilation of capillaries, spider veins), atrophy of the skin (which gets thin and bruises easily) and other mucous membranes, proximal muscle weakness (hips, shoulders).
The excess cortisol may also affect other endocrine systems and cause, for example, reduced libido, impotence and infertility.
Untreated Cushing's syndrome can lead to heart disease and increased mortality. Excess ACTH may also result in hyperpigmentation of the skin.
For a more complete list of Cushing's Symptoms, see the Cushing's Checklist. Many tests are done to determine if a person has Cushing's. You can find a listing of them here.
The message boards are very active and we have weekly online chats, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum in honor of Dr. Harvey Cushing's birthday April 8, 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.
Who Gets Cushing's?
People just like YOU!
Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of Forbes Magazine, Best of the Web Issue. The title: "Use With Care" by Matthew Schifrin and Howard Wolinsky.
This kind of mainstream exposure is helping increase awareness for this often misunderstood disease.
site, as well as others in the "Cushing's Help family", is
designed and maintained entirely by
Please note that I am a patient not a doctor. I cannot answer any medical questions.
Thank you all for your support!
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