What's New?
June 16, 2004
To read the HTML version of this newsletter, or the archives, on the Internet, please click here.

In This Issue: Happenings Site News Meetings Chat Info
Important!

Please read the chat directions below and at http://www.cushings-help.com/chatroom.htm, so you're ONLY in the Cushing's Room, not both Cushing's and Power Surge. Many people end up being in both rooms, instead of only one.

Next Online Newsletter will be Wednesday, June 23
read archived issues here »
News!
• Last Wednedsday we had a guest chat with Cushing's patient, Shauna Nelson.
Shuana has dealt with a very rare, unusual form of Cushing's. Instead of a tumor, she has ACTH hyperplasia, meaning her ACTH cells are spread all over her pituitary.

Shauna had to make a big decision: either have her entire pituitary removed, have radiation or have both adrenal glands removed.

In 2001 Shauna had an unsuccesful pituitary surgery followed by a BLA in 2002. Following the BLA she lost all Cushing's symptoms and weight and went from 245 pounds to 110.

Shauna has suffered through several Adrenal insufficiencies and shared some of her experiences on our 911: Adrenal Crisis! pages. She is an active member of the message boards, helping everyone out, whenever possible. Shauna says:

"If anyone is considering a bilateral adrenalectomy, I would tell them that I'd do it again tomorrow. I have horrible days but I also have extremely wonderful days. And the horrible days are still not as bad as how I felt when I had Cushing's. In fact, I never knew how bad I felt with Cushing's until I was on this side of it. Life has never been better, and I appreciate good health now much more than I ever would have without having Cushing's.

I'm glad I went through Cushing's, when it's all said and done. It made me a more compassionate, caring person. Some of us don't learn life's lessons until we're smacked upside the head with them. I've learned. I will never take for granted a day that God has given me. I will always value, respect, and love my family and friends. Without them and the support from this board, I wouldn't have made it though to be the new person I am now. Some of us are very lucky people in this life, and I credit my experience with Cushing's for shaping me into the person I am now."

Read Shauna's Bio
Read Shuana Nelson's First Guest Chat, June 9, 2004.

• There are now 2328 members on the Message Boards.

• We welcome your articles, letters to the editor, bios and Cushing's information. Submit a Story or Article to either the snailmail CUSH Newsletter or to an upcoming email newsletter at http://www.cushings-help.com/newsletter_story.htm A no-obligation free sample of the CUSH Organization Newsletter is also available from that same link.


Newest Bios:
To add or edit your bio, please click here »
Alfie Alfie has steroid induced Cushing's Southern Illinois
Holli J Holli has PCOS and they're testing for Cushing's Syndrome Rockledge, Florida
Jaqueline B Updated
Jaque has cyclical pituitary Cushing's.
She just added a new picture to her bio.		 Bogotá, Colombia
Kelsey Kelsey has had 2 pituitary surgeries and her tumor has returned Texas, south of Dallas
Kimberly Updated
Kimberly had an adrenal tumor removed early March, 2004.		 Northern Virginia
Marilyn S Marilyn has been diagnosed with acromegaly. Edgewood, Ky
Melissa Updated
Melissa has been diagnosed with PCOS and hypercortisolism.  She has added pictures to her bio.		 Tampa area, FL
Melissa B Melissa B has Steroid Induced Cushing's Wayne, Pennsylvania
Renee (Friday) Updated
A 5 mm tumor has been found on her pituitary gland and is scheduled to be removed
on June 30, 2004.		 Cleveland, Ohio

• If you've been diagnosed with Cushing's, please participate in the Cushing's Register »

The information you provide will be used to create a register and will be shared with the medical world. It would not be used for other purposes without your expressed permission. Note: This information will not be sold or shared with other companies.

Lynne Clemens, Secretary of CUSH Org is be the person responsible for the creation of this register. If you have any questions you may contact her at lynnecush@comcast.net. You do not have to be a member of CUSH to fill out this questionnaire, as long as you are a Cushing’s patient. We do not believe that the world has an accurate accounting of Cushing’s patients. The only way to authenticate accuracy is with actual numbers. Your help will be appreciated. Thank you."

 
Fundraising:
Burden Bears:
Natalie has been collecting some money for CUSH.

She says: "I am making "Burden Bears" and selling them at my craft shows and I am donating $1 from each sale... ...So far I have collected about $20 for us."
The Cushing's Store
for all kinds of Cushing's Labeled clothing, coffee mugs, totebags and much more. Great for your endo or Secret Someone.
Remember iGive.com...
... all year round.

iGive.com allows online stores to donate a percentage of their profit to running these Cushing's Support sites (the message boards, http://www.cushings-help.com, http://www.CUSH.org, http://www.cushings-support.com and http://www.cushingsonline.com) at no cost to you. So far, members have raised $297.57, and it hasn't cost them a cent.

See the list of participating merchants »

 

Thank you so much for your support.


Thanks to all of you for these clever Fundraising ideas.

CUSH can always use funds to help us all, by spreading the word and helping others. What can *you* do to help CUSH?

 
Upcoming Conventions, Meetings and Seminars:


•CUSH is proud to announce the Convention for October, 2004 in Nashville, TN. Dr. Lewis S. Blevins will be the keynote speaker of the 2004 CUSH Convention at Vanderbilt Ingram Cancer Center, Preston Research Building, Nashville, TN. Dr. Scott C Isaacs will also be among the speakers. Dr. Issacs' topic will be "Coping With Cushings Through Diet and Lifestyle". More info here »

Tickets and housing are now available. This info is on the message boards.

•Pictures from the 2003 CUSH Convention, Portland Oregon: • Pictures from Spaghetti Freddy's, May 1, 2004. This "Massachusetts local meeting" turned out to have people from Massachusetts, Connecticut, Rhode Island, Michigan, Virginia and Canada!

• More upcoming local meetings are listed here »

• Sign up for notification of local meetings. You need not be a CUSH member to participate.
Online Chats:
Please join us in the Chat Room TONIGHT at 9 PM Eastern. (Click here for directions, and then continue on to TheCushingsChat.

Important! People who do not have Java on their browsers may use another version of the chatroom.

Please be sure to continue on to TheCushingsChat. While you're in the Power Surge room, click on the black "X" at the top of the room (Not the X in the blue circle) This will put you in the area where you can see all the rooms listed. You'll see the one to the list that says TheCushingsChat. Double click on that name to get into the room. For more help in getting into the correct room, please read these instructions.

If you do have menopause issues, be sure to return on Thursday nights at 9 eastern for wonderful information, guest speakers and camaraderie.

I hope to see you tonight!


~~~~~~~~~~~

Cushing's Help and Support at http://www.cushings-help.com
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