March 28, 2007

In This Issue

Search the website:

Cushing's:
Differences in cortisol levels and body mass index between East Asians and Caucasians with Cushing's Syndrome: an East Asian phenotype for Cushing Syndrome
• Former El Segundo Councilman John Gaines dies
• Yuma youth soldiering on after rare (pituitary)tumor removal
• Guyana: Linden woman urgently in need of surgery still to raise US$12,000

Adrenal:
• The Nation Revealing All Before Anyone Else Can

General Health
US Postage Stamps for Cushing's Awareness
Order Cushing's Awareness Silicone Bands for yourself, a family member or donate to a Cushing's patient at NIH
Upcoming Meetings: Washington, DC and Toronto ENDO 2007.


Also on the website:

Pictures from Past Meetings:
April 8, 2007, Petitions on the message boards to have April 8 be declared as Cushing's Awareness Day again this year. This date was chosen because it was Dr. Harvey Cushing's Birthday. More info here »

Pictures from the Pittsburgh, PA Christmas Dinner, December 13, 2006
Click here »

Pictures from the April 5-8, 2006 CUSH Cushing's Awareness Day Medical Forum, held in Oklahoma City, OK
Click here »

Upcoming Meetings:
June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center.

Recent Donations:

click for fullsize graph

• In honor of:
   Dr. Jennifer Pecina
Other donors
To make a donation
Donations cover...

News:
Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.
• The message boards now number over 6,000 registered members.
Search Tool. Use this tool to search this site, PubMed, NIH Clinical Trials or any other website. More sites to be added soon.
CUSH Cuisine! $10.00 each, including shipping.
More info »
Guest Transcripts »

Latest Media:

Sam who has been on The Mystery Diagnosis TV Show (Discovery Health) has been invited to appear on Dr. Phil taping soon. More info as it becomes available.
Helpful Books (pituitary):
Art Russell shares the powerful story of his struggle with Cushing's Disease.
October 18, 2006 Obese from Secret Disease (ABC News) (Jaimie on the boards) Read this article »
Jun 17, 2006 Student hopes to rebound from brain surgery Rare disease caused teen to double weight in a year Read this article »
May 21, 2006 Rare disease treated at OHSU (sowens on the boards) Read this article »
May 15, 2006 Patients Fighting Cushings Disease (Rooon on the boards)
Read this article »
MedScape News

Newest Site Features:
Read the Current Newsletter »
Packing Suggestions For Surgery
Talk to Your Doctor
New Diabetes Drug Successfully Used to Treat Pituitary Tumors
New Approaches to Managing Tumors of the Pituitary Gland Offer Patients Hope.
Corticosteroid Converter.
More info on Adrenal Crisis.
Helpful Hints for dealing with Cushing's Symptoms. The first ones are here.
Add your Helpful Hints
US Cushing's Postage Stamps to promote Cushing's Awareness. See a sample here.
Cushing's Bracelets to promote Cushing's Awareness. Order the bands here.
Reviews of this site

Testing:
Midnight Salivary Cortisol Versus Urinary Free and Midnight Serum Cortisol

Videos and Webcasts:
Video: Transnasal Pituitary Surgery
Webcasts from NIH Pituitary Symposium and Endo 2004.
Videos on several topics of interest to Cushing's Patients:
Jaimie and others from the message boards on TV
• Transsphenoidal Pituitary Surgery
• Laparoscopic Bilateral Adrenalectomy (BLA)
• Transsphenoidal Pituitary Surgery
A Young Woman's Battle with a Hidden Enemy: Cushing's Disease
Top Five Webcast feature updates twice daily and highlights the most popular webcasts viewed each day.
New pages and updates

Doctors and Hospitals:
The US Helpful Hospitals list has been updated

Helpful Doctors:

New Doctors added to
Las Cruces, NM
East Setauket, NY
Erie, PA
Astoria, OR
Portland, OR
Boston, MA
Toronto, Ontario, Canada
Norwalk, CT
Pennsylvania
Lucknow, India
Moorooka, Queensland, Australia
Budapest, Hungary

Doctors updated:
Dr. Blevins is leaving Vanderbilt Hospital to accept a position as Medical Director of the California Center for Pituitary Disorders at UCSF in California beginning May 1, 2007.
Dr. Roberto Salvatori, Johns Hopkins, Baltimore, MD
Dr William Ludlam has moved to Seattle, WA from Portland, OR.
More info here
Dr. James Neifing, Portland, OR

There are currently over 730 bios on the website.
See them all by clicking here.

Newest Bios:
Add or Update your bio here
Newest bios,
listed by type of Cushing's
Leslie
Natasha
Carol
Debbie
Rania
Oklahoma
Grace
Mindy
Sonia
Tracy
Melanie
Eleanor
Yvonne K
Brenda P
Kassylake

Updated Bios:
Newly updated bios, listed by type of Cushing's
Jen S
Dawnell
Judi
Cathy Tia
Ann
Elise
Jessica M
MaryO

In Memory
Sue Ann Koziol (SuziQ),
CUSH Founding President

Sue was a very special friend to Cushies world-wide. We will remember her always.

• To light a candle or post a tribute for Sue, please click here

• To read Sue's bio, please click here

• To read more about Sue's journey with cancer, please click here


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Cushing's Awareness Day! April 8, 2007


What Can *YOU* Do to help?

Cushings Awareness Day 2007 passed!

It's official, the Senate Resolution 127 passed last night making April 8th, 2007 National Cushing's Awareness Day. Let your newsmedia know!

PS, and if you can find Sen. Jim Inhofe's e-mail address (I am late for work and don't have it immediately avail) please tell them how much we appreciate their efforts. He's the US Senator for Oklahoma.

Thanks, Cheryl Farrar
CUSH Vice President


• From Rebecca Sibley

I just wanted you to know that this is the response from one of our house of representatives in SC and that is a going to co-sponsor the house bill for Cushing's Awareness Day!!  My letter to him is below too.  I have tried to get this in our paper too but so far they won't do it.  I sent it in to the state paper and I know they have at least opened it but have no idea if they will print it or not.  I will update them that Rep Bob Inglis will be a co-sponser so that might make the news!
Thanks,
Rebecca Sibley

Rebecca,

Thank you for bringing this to my attention.  You are the first contact I've had on this topic. I'm so sorry to hear how you have suffered with this, and I pray that you are continuing to get relief.

By copy of this note, I'm asking Philip Van Steenburgh of my office to sign me up as a co-sponsor of the House bill.

Blessings,

Bob


http://communitytalk.rd.com/WebX?14@927.FmRaaDQgM3K.0@.feb9f0b/45

From Reader's Digest:


Have a question about heart health? Ask Dr. Mehmet C Oz!
Dr. Oz is a world-renowned heart surgeon at New York-Presbyterian Hospital, Reader's Digest columnist, and vice-chair and professor of surgery at Columbia University. He will be answering your questions in a LIVE CHAT on Thursday, March 22 at 2 p.m. EST.

Send in your questions today and visit rd.com/chat on March 22 to read Dr. Oz's answers.

Read the monthly Reader's Digest column, "Health IQ", by Dr. Oz and Dr. Michael Roizen for more tips on feeling your best.

JayneK    Wed 03/21/07, 12:12:49

National Cushing's Awareness Day is April 8. How is the heart affected by having Cushing's Syndrome/Disease? What can be done to strengthen the heart muscle when surviving Cushing's?

Sign Amber's Petition. www.ipetitions.com/petition/CushingsDiseaseAwareness

Amber writes:

Thought I would explain what this petition can do....

First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.

Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.

Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

CherylF, CUSH Vice President suggests:
I contacted Senator Inhofe's (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.

Please contact your US Senator's office and ask them to support this Resolution. I'm not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe's (Okla) office to co-sponsor the Resolution.

If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (CUSH.org) , and I believe on this one as well. We won't be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested...more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you'd like...together we can make a difference!

cheryl1957ann@sbcglobal.net
Thank you in advance, Cheryl Farrar- CUSH Vice President

Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.

More information here

Follow Jayne's Lead. She writes:

Of course, I'll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their "contact us" info. Contact the hosts of the show and the producers to mention April 8th and Cushing's Awareness.

I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2x3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I'd make enough. Oh Well!

Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I'll be setting up a booth at the women's Forum again this year. I hope to set up at some health expo's and at the local Hospital or at least make/pass out flyers.

US Cushing's Postage Stamps to promote Cushing's Awareness. See a sample here.

• Wear Cushing's Bracelets or T-Shirts to promote Cushing's Awareness. Order the bands here.. Cushing's Awareness T-Shirts and other products are available here: Cushie GiftStore.

Post your ideas and what you have done here: http://cushings.invisionzone.com/index.php?showtopic=19173


Last year:

For Immediate Release:                                                                   

                    April 6, 2006                                                                                                          

INHOFE DESIGNATES ‘NATIONAL
CUSHING’S SYNDROME AWARENESS DAY

More info here »


April 8, 2006, the Cushing's Understanding, Support & Help Organization (CUSH) petitioned in the USA to have April 8 be declared as Cushing's Awareness Day. This date was chosen because it was Dr. Harvey Cushing's Birthday. More info here »


The Cushing's Awareness Day Proclamation, from http://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. (Agreed to by Senate)

More info here »

 

Dr. Theodore Friedman from Charles R. Drew University, Division of Endocrinology is currently seeking patients to participate in a research study of pituitary dysfunction. More info.


New on the Message Boards:

Guest Questions

 


You do not need to be a member of the message boards to ask questions and get help here!  We are hoping that this helps the people who were asking questions in the InstaChat but never got any answers.




Updated Pages on the Website:

Testimonials http://www.cushings-help.com/testimonials.htm
I'm grateful for your site and eager to learn more.


Mary, I can never thank you enough for all you have done, this web site, you doing this out of the kindness of your heart.

Thinking of you and sending good thoughts your way, Mary. We love you and miss you. You have made a difference in so many lives, including mine. I am forever grateful.


News Items:

Media:

• Sam who has been on The Mystery Diagnosis TV Show (Discovery Health) has been invited to appear on Dr. Phil taping soon. More info as it becomes available.


Cushing's:

Differences in cortisol levels and body mass index between East Asians and Caucasians with Cushing's Syndrome: an East Asian phenotype for Cushing Syndrome
Clinical Endocrinology

To cite this article: Hui-Pin Hsiao, María López Iglesias, Margaret F. Keil, Sosipatros Boikos, Audrey Robinson-White, Constantine A. Stratakis
Differences in cortisol levels and body mass index between East Asians and Caucasians with Cushing's syndrome: an ?East Asian? phenotype for Cushing syndrome
Clinical Endocrinology (OnlineEarly Articles).
doi:10.1111/j.1365-2265.2007.02793.x

Full Article

LETTER TO THE EDITOR

Differences in cortisol levels and body mass index between East Asians and Caucasians with Cushing's syndrome: an ‘East Asian’ phenotype for Cushing syndrome

Correspondence: Constantine A. Stratakis, Pediatric Endocrinology Training Program, DEB, NICHD, National Institutes of Health, Building 10, Clinical Research Center, Room 1-3330, 10 Center Drive, MSC1103, Bethesda, MD 20892, USA. E-mail: stratakc@mail.nih.gov


Yuma youth soldiering on after rare tumor removal
Yuma Sun - Yuma,AZ,USA
YUMA RESIDENT SCOTT RICHMOND, 18, recently had surgery to remove a tumor on his pituitary gland as a result of Cushing's Disease. He now takes five separate ...


• From http://www.dailybreeze.com/news/articles/6506242.html


Former El Segundo Councilman John Gaines dies
The family man and reluctant politician was good at playing the "bad cop" and was known for being passionate about his work.

Staff Writer
 
John Gaines, a former El Segundo city councilman known for a gruff exterior behind the dais but a soft demeanor in his personal life, has died. He was 56.

Gaines died at home late Tuesday after a yearlong battle with cancer, the result of Cushing's syndrome, a condition caused by excessive cortisol production, his family said.

Read the rest of the article at http://www.dailybreeze.com/news/articles/6506242.html


• From http://www.stabroeknews.com/index.pl/article_general_news?id=56516022

Guyana: Linden woman urgently in need of surgery still to raise US$12,000
Wednesday, March 14th 2007

The Linden woman who is in urgent need of surgery as she is suffering from a rare disease, Cushing's syndrome, is yet to raise the US$12,000 needed for the surgery in Trinidad.

"She is sitting at home wasting away and all the places her brother and I have approached are not giving any assistance," Valerie Sharpe of the Regional Welfare & Women's Affairs Committee, Region 10, told Stabroek News yesterday. The welfare committee is assisting the woman and her family in raising money for her surgery.

She said so far they have only managed to raise about US$1,000, a far cry from the money Maureen Mohabir needs to save her life. Her relatives had told Stabroek News that the Ministry of Health had been approached and while promises were made for assistance to be given this has not yet been verified and they would still have to raise funds on their own.

Sharpe said that most of the companies approached, except for one, have indicated that they cannot give any financial assistance but should there be a fundraising activity they would assist with some free products. She said one religious body that was approached told them that their medical board had informed them that the surgery can be done in Guyana. She said she has since written the body and asked for assistance in identifying the medical practitioner who can do the surgery but no response has been forthcoming.

She pointed out that Mohabir has been suffering from the disease for sometime and she went from doctor to doctor but all were unable to identify her ailment. It was last year that a local doctor made some preliminary findings and the woman went to Trinidad to have it verified and a doctor there confirmed that she was suffering from Cushing's syndrome.

"If the surgery could be done here we would be happy because all she wants is help to live. But it is surprising that even the Ministry of Health did not indicate that the surgery could be done in Guyana," Sharpe pointed out.

She said one of the woman's brothers who has been at the forefront of the fight to get the money for the woman has now run into some problems with his place of employment, putting the family into an even more difficult situation.

Sharpe is appealing to Guyanese here and overseas to hear the woman's cry and answer it so that she could receive the help she needs.

Mohabir has severe swelling, a symptom of the disease, and she is in constant pain. Persons wishing to help Mohabir can do so by placing donations in the Republic Bank account, a/c#516-773-9 which is in the name of the Regional Women's Affairs Committee. Persons can also contact Sharpe on telephone numbers 444-6058 or 444-3048 or the woman's family on telephone numbers, 444-4214 and 444-2089

Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults ages 20 to 50. An estimated 10 to 15 persons in every million are affected each year.

Symptoms vary, but most people have upper body obesity, rounded face, increased fat around the neck, 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 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.


Adrenal:

• From http://www.nytimes.com/2007/03/25/weekinreview/25swarns.html?_r=1&oref=slogin

The Nation Revealing All Before Anyone Else Can
New York Times - New York, NY, USA
President Kennedy denied reports that he had Addison’s disease, or adrenal insufficiency, and required hormone injections. President Lyndon B. Johnson chose ...
See all stories on this topic


• From http://www.mysanantonio.com/news/metro/stories/MYSA031307.dhea.KENS.d234aad.html

Is DHEA an over-the-counter Fountain of Youth?

Web Posted: 03/14/2007 01:38 AM CDT
Wendy Rigby
KENS 5 Eyewitness News

Some people believe they have found the Fountain of Youth in a product called DHEA, although a recent study disagrees.

Dehydroepiandrosterone is available over the counter, and it's said to ease the aging process by replacing naturally occurring DHEA. Your adrenal gland secretes DHEA, a hormone that decreases in levels as you age, starting at about 30.

"If you give DHEA, and bring it to the same level as the young people, is it going to have beneficial effects?" said Dr. Sreekumaran Nair, who tried to answer that question in study recently published in the New England Journal of Medicine.

The study involved giving elderly men and women either a placebo or DHEA for two years to see if it improved muscle mass, strength, bone density, glucose tolerance and quality of life. The answer was no.

"I would say it didn't help at all," Nair said.

To slow the effects of time, Nair said, regular aerobic exercise, like walking 30 to 45 minutes, five days a week, strength training and a healthy, low-calorie diet, do work.

There are no known benefits or side effects to DHEA. It has not been evaluated by the Food and Drug Administration, and it is not recommended for men with enlarged prostates or people with heart disease.


Pituitary:

Ronda’s tummy swollen by enzyme imbalance
Trinidad News - Port of Spain,Trinidad and Tobago
Saliman Hosein was almost in tears yesterday when she told Newsday about her 19-year-old daughter’s medical condition — Pituitary Adenoma. ...

Stallone and Holyfield: Two Over-the-Hill Boxers Linked To HGH
Blogcritics.org - Aurora,OH,USA
I know for a fact that low-level, local professional bodybuilders in New Jersey were using black market “growth” - mined from the pituitary glands of the ...


Add your Helpful Hints for Dealing with Cushing's to the website and the email Newsletters.

Newest Bios:
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm
Adrenal
Debbie (CanadaDeb)  Debbie's first pituitary surgery was in 1994 and has had 2 more pituitary surgeries. She has also had an adrenalectomy and radiation and developed Nelson's in 1998. Cornwall, Canada
     
Not Yet Diagnosed Patients
Carol (Deirdre) Carol is an nursing student with tentative Cushing's diagnosis. She asks if anyone with the experience or knowledge of Cushing's, surgery and or nursing school or other physically and mentally demanding situations, please offer info. Houston, Texas
Dawnell (hazleyes74) Updated bio
Dawnell is not yet diagnosed with Cushing's but she has been diagnosed with PCOS, Chronic Fatigue Syndrome and Fibromyalgia so far. She has been prescribed Celexa for mild depression then Effexor XR and Toprol XL; and Relafen and flexeril.
 Kingston Mines, Illinois
Natasha (Natasha)  Natasha has been diagnosed with diabetes and PCOS so far. She's had an elevated dexamethasone test and will be seeing a new endo in April.  St. Albans, West Virginia
Rania (Cincy Rania)  Rania is a law student who has been taking steroids for arthralgia (arthritis-like symptoms and had Cushing's symptoms during the past year.  Cincinnati, OH
     
Pituitary Patients
Debbie (CanadaDeb)  Debbie's first pituitary surgery was in 1994 and has had 2 more pituitary surgeries. She has also had an adrenalectomy and radiation and developed Nelson's in 1998. Cornwall, Canada
Leslie (Leslie) Leslie had pituitary surgery at MD Anderson and had her tumor removed by Dr. McCutcheon  Euless, Texas
     
Steroid-Induced Patients
To add or edit your bio, http://www.cushings-help.com/forms/bio.htm

Newest Helpful Doctors:
Lewis S. Blevins, Jr., M.D., F.A.C.P.
Endocrinology dept.
Vanderbilt University
Nashville, TN
(615) 936-1653
 Updated bio
Dr. Blevins is leaving Vanderbilt Hospital to accept a position as Medical Director of the California Center for Pituitary Disorders at UCSF in California beginning May 1, 2007.

Dr. Blevins has written a book called Cushing's Syndrome

Dr. Blevins is on the CUSH Medical Advisory Board.

 Until May 1, 2007 Nashville, TN
Dr. Rueben Torres
Hillrise Dr
Las Cruces
New Mexico
Phone: 505-532-8008
PCP

Dr. Rueben Torres is an amazing family doctor. I don't think that I would have made it this far without him and his staff. He takes the time to meet with you, listen to you, and care. He has a way of explaining even complex chemical compositions so that you understand what is happening and why. I highly recommend him to anyone in the Southern New Mexico area.
Las Cruces,
New Mexico
To add your helpful doctor, http://www.cushings-help.com/forms/doctor.htm

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Upcoming Conventions, Meetings and Seminars:

DC Metro Area, TBA More info as it becomes available.

June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center. More info as it becomes available.

• More upcoming local meetings are listed here


Online Chats:

Please join us in the Chat Room TONIGHT at 9 PM Eastern. Click to access through the message boards

If you are not yet a member of the message boards, please use this page: http://cushings.invisionzone.com/chatroom.htm

This room is always open, and has convenient links so that you can get needed information while you're chatting.

I hope to see you tonight!


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