Over 10 Years of Support For Cushing's Patients!
! A Word from the Founder, MaryO...
Cushing's Awareness Day at Jimmy Buffett's Margaritaville
Cushing's Awareness Day at Jimmy Buffett's Margaritaville
The picture in this photo is of Donna Sellers, her son, John, and Sonny Perdue, Governor of the State of Georgia. Donna is the president of John's Foundation for Cushing's Awareness and mother of a Cushing's patient. The foundation can be found at http://www.jfcainc.com/
The screen shot above is from http://www.margaritavillekeywest.com/index.php?page=cushingsOccasional Newsletters are Back: Read the Current Issue, November 15, 2010. Members of the cushie.info site will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest. Non-members may subscribe through the Newsletter Subscription module on the left side of the cushie.info site.
Toolbar
I saw this on another site and I stayed up all night making one for Cushies because I thought it was so cool.
This is a toolbar you can install on any browser and it will link to what I think are the most important parts of the Cushing’s websites. If you have other ideas, please let me know.
Right now, this contains (from left to right)
- The Cushie ribbon icon which takes you to the home page of the newer cushie.info site. Click on the little down arrow to the right of the ribbon and another whole menu appears!
- Next to that is a Google search box.
- An icon for the 911 Adrenal Crisis! page
- A link to the Cushie Reads book recommendations page on amazon.com
- The Cushie Calendar
- All the bios, arranged by diagnosis type
- Add (or update) your bio
- Our locations around the world
- The message boards and chatroom
- Helpful Doctors list
- Add (or update) your Helpful Doctor
- The Support page where people can make donations to help keep all these websites going.
- A little scrolling message area for Cushing’s news.
- Cushing’s blogs. I’m still working on this – and I’m not sure how many I can add but for the moment, this blog is included as well as Cushie Bloggers and survive the journey
When any of these update, the icon changes to show that there are new posts.
This area now includes NIH Clinical trials for Cushing’s, pituitary and adrenal. Be the first to know when new trials are listed.- The Cushings Help Organization, Inc cause on Facebook
- Links to Staticnrg and Cushings on Twitter. Again, more can be added. If you talk mostly about Cushing’s on Twitter, please let me know.
- The new CushieWiki. BTW, please feel free to sign up and become a contributor/editor.
- A radio button – you can play the Cushing’s podcasts right from this toolbar. You can also add stations that you’d like to listen to.
- You can also add other modules like games, weather, email, hundreds of different things.
Download this toolbar or see a sample.
About privacy:
cushie tools is committed to maintaining the following privacy practices:
- No Spyware Policy – the toolbar does not collect or transmits Identifiable information and does not monitor personal toolbar usage.
The toolbar sends unidentifiable and non-personal statistical data to enable quality assurance and improve support processes. Such non-personal data includes unidentifiable usage of toolbar components and queries. You can opt not to send such statistical data at any time from your toolbar Options dialog box.- No Adware Policy : exposure to unwanted advertisements is not required in order to use the toolbar. The toolbar does not launch pop-up or pop-under advertisement windows or any other type of obtrusive ads.
- Unobtrusive: The toolbar does not enable other applications to access data stored on your computer's hard drive or in your online accounts. The toolbar does not modify pages you visit or modify your search experience. You may voluntarily opt to receive Publisher notifications (such as Community Alerts) or use other advanced functionalities offered by cushie tools.
- Easy uninstall : you can easily uninstall the toolbar at any time using the toolbar's standard uninstall package (Add/Remove Programs in Windows, Add-on Removal in Firefox, etc.).
- Easy deactivation: you can easily deactivate your toolbar at any time by clicking the "View" menu in your browser and deselecting the name of your community toolbar.
- Full control : you have full control over your toolbar and you can add/remove toolbar components at any time using your toolbar's Options dialog box.
Report - cushie tools is committed to ensuring your Privacy and safety while using your community toolbar. If you have a reason to believe that your rights have been infringed upon, please email [email protected] to contact the owners of Platform that was used by cushie tools to create your community toolbar, and your application will be handled at the earliest convenience.
Finally, I would like to add that installing this toolbar is possibly a way for the sites to make a little money although the hosting site doesn’t disclose how much they give back and how many people have to do how much searching to make any kind of profit.
The theory is that Google pays the host company, Conduit, like it does for Google ads – I’ve seen them on other sites but have never used them because I want to try to keep the sites ad free and non-tacky. Then, depending on the number of people who have installed this toolbar, and how much they use it, a percentage of that money is supposed to come back to Cushing’s Help.
I have no expectations of making any money, though. I just thought that it looked like an interesting new way for people to find things easily on the websites, listen to podcasts, and get the latest news.
Please note – after installation there’s a little popup window that says you might get alerts. I promise I won’t send those out unless it’s something serious like the boards are back up after a day of being down.
Thanks for reading! I hope you’ll give this a try.
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’ 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.
To read more: St. Louis medical milestone: Twittering from Barnes-Jewish Hospital operating room
For the Voice Chat Guest Schedule, please click here.
Future Guests:
Sherri (slfrese) date to be determined. She is not yet diagnosed with Cushing's but has several symptoms and is testing.
Debbie, To Be Rescheduled. She is not yet diagnosed with Cushing's but has several symptoms and is testing. She was diagnosed with Graves 15 years ago and has two VERY small nodules one of her adrenal glands.
Read Debbie's bio at here
Steve (sowens), date to be determined
Missaf, date to be determined.
Tammie (makeitgreen), date to be determined
Elisabeth (bethnaz), date to be determined
Kate (Katie O), date to be determined
Cindy (CindyRPT), date to be determined
Jo and Corrie, date to be determined
Traci H, date to be determined
Nicole B (Copacabana), date to be determined
Lisa (Ikho), date to be determined.
Judy's Sister, date to be determined.
LynziMarie, date to be determined.
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.
A new site for people with Addison's Disease/Adrenal Insufficiency. This is based on the fact that many pituitary patients have lost adrenal function as a result of pituitary surgery.
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
Robin Writes:
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.
http://www.pageflakes.com/staticnrg.ashx?
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.
Robin writes:
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 Organization, Inc 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!
I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.
Thanks so much for all your help and support, Alice!
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. Read the article here.
Donation In Honor Of: Dr. Jennifer Pecina
Sharon says:"I gave the donation in gratitude for the wonderful care I had from Dr. Jennifer Pecina. Not only is she a competent, caring, very bright physician, but she takes time to talk on a more person-to-person level. Dr. Pecina was always willing to order any tests and make any referrals she felt were indicated rather than take chances with my health. She suspected Cushing's and made the referral to the endocrinologist. I can honestly say that Dr. Pecina was the best PCP I have ever had, and I will truly miss her even though I am happy she is leaving Texas for Rochester, MN, where she will be married.
Thanks, Dr. Pecina! You have my gratitude, respect, and affection!"
This site, as well as others in the "Cushing's Help family", is designed and maintained entirely by
Mary O'Connor.Please note that I am a patient not a doctor. I cannot answer any medical questions.
Thank you all for your support!
