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! A Word from the Founder...

For Non-Profit Status

New! Thanks to a suggestion on the message boards, Cushing's Help now has a mailbox for those who wish to donate by check!

For Non-Profit StatusTo send a check: Mary O'Connor
Cushings Help
4094 Majestic Ln. #328
Fairfax, VA 22033

Refer A Friend using Revolution Money Exchange


For the Voice Chat Guest Schedule, please click here.

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.

Listen to CushingsHelp on internet talk radio

Subscribe to the CushingsHelp podcasts on iTunes

Weekly Chat Reminders, Voice (Call-In) Chat Reminders, new podcasts, Meeting / Webcast Notifications and Occasional Newsletters are back! If you want to be in the know, Register here

New! Podcasts by many message board members. Listen live to archived interviews with MaryO, Kristin, Carolyn, Aly, Melissa A, Danielle, Sarah, Monic', 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.

Cushing's Pocket Reference

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:

http://del.icio.us/staticnrg

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 Cushing's Help and Support 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 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!


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