What's New? 

April 5, 2006
 
 
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In This Issue:HappeningsSite NewsMeetingsChat Info
Our Condolences to the family of Sue Koziol (SuziQ)
Cushing's Awareness Day Forum in Oklahoma City, OK April 7, 2006.
Cushings Awareness Day Conference Set
Body Language
Nigerian Medical Doctors As Life Savers In US
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
Order the CUSH Cookbook
Fun'n'Sun Cushie Cruise
Upcoming Meetings in Oklahoma City and the Washington, DC metro area. ENDO 2006, Boston Convention & Exhibit Center.
Read all about them below.
News!



April 5 CUSH Founding President, Sue Ann Koziol (SuziQ).

April 5
She was a very special friend to Cushies world-wide. We will remember her always.

There will be an online memorial for Sue during the Cushing's Awareness Day Medical Forum in Oklahoma, April 5-8, 2006. For more information, please visit this topic on the message boards

April 5 To light a candle or post a tribute for Sue, please go here: http://suziq.memory-of.com

To read more about Sue's journey, please click here: http://cushings.invisionzone.com/index.php?showtopic=14655




From the message board post at http://cushings.invisionzone.com/index.php?
showtopic=14273&pid=117311&st=0&#entry117311

CUSH proudly presents a Cushing's Awareness Day Forum in Oklahoma City, OK on April 6-8, 2006.

Cheryl Farrar, Oklahoma CUSH Representative, has been working hard to put together a medical forum to celebrate Cushing's Awareness Day. She has arranged for two doctors to speak (a neurosurgeon and an adrenal surgeon) and has a message in to a third doctor. She also is going to ask Senator Inhofe if he would speak for us at the beginning of the forum, so that we may thank him for the Senate Proclamation about Cushing's Awareness Day.


I'd like to say a special 'thank you' to Cheryl for putting this forum together for us.

More info here: http://cushings.invisionzone.com/index.php?
showtopic=14273&pid=117311&st=0&#entry117311


CUSH Cookbooks are here!

The CUSH Cookbooks are only $10.00 each including shipping and handling.

Any profits will go to help bring awareness for Cushings. Thank you!

The cookbooks have about 169 recipes, so it isn't going to be a huge cookbook, but one that includes contributions from many Cushing's message board members..

To purchase a cookbook send a check to:
CUSH
PO Box 1843
Florence, AL.
35631-1843

please indicate on your check "Cookbook" or include a note with payment.

You can also purchase cookbooks through Paypal. Please indicate that the payment is for "cookbook."

Be sure that your correct mailing address is included with payment along with a contact phone number in case we have questions concerning your order.

If anyone has any questions concerning cookbook payments please contact CUSH Treasurer Cathy Gifford at CUSHOrg@aol.com


 



Cruises mentioned here are not sponsored by CUSH
but a fun time with others met on the boards and in the chatroom.

The ship is Explorer of the Seas and this is a 5 night cruise out of NY/NJ). All meals are included. 2 days at dock in Bermuda.

The ship has a rock climbing wall, ice rink, mini golf, you name it, it's got it.

Must be prepared to have fun, relax and chill!


News:
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

Note: These articles are provided in furtherance of the mission of Cushing's Help and Support to help people with Cushing's or other endocrine problems, their friends and families through research, education, support, and advocacy. These news items are intended to serve as background concerning its subject for patient-physician discussions and discussions among Cushing's Help and Support Message Board Members.

These articles contain information by authors and publishers that is subject to the Copyright Act of 1976, and "fair use doctrine" therein, effective on January 1, 1978 (17 U.S.C. § 101 et seq.). Cushing's Help and Support makes no representation that the information and any of the views or comments contained in these articles are completely accurate or current. Cushing's Help and Support takes no responsibility for any of the content.

Cushings Awareness Day Conference Setfrom http://newsok.com/swokc/article/359/

Cushings Awareness Day Conference Set

By Cheryl Farrar
MyNewsOK contributor

 
Cheryl Farrar Sept 04  at 240 lbs. 1 month before Pituitary surgery<br/><b>Community Photo By:</b> Linda Laxson<br/><b>Submitted By:</b> cheryl,
Cheryl Farrar Sept 04 at 240 lbs. 1 month before Pituitary surgery
Community Photo By: Linda Laxson
Submitted By: cheryl,

More Photos

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 relative rare and
most commonly affects adults aged 20 to 50. An
estimated 10 to 15 of every million people are
affected each year.

A conference to create awareness about Cushing's syndrome has been planned for April 6-8 in Oklahoma City. Conference organizers hope to draw physicians, medical students, and other interested persons, as well as people who suffer with the disease to the event.

The conference will showcase information provided by Dr. Stan Pelofsky-a neurosurgeon, Dr. Jay Cannon-an adrenal surgeon, Dr. Modhi Gude- an endocrinologist, and Dr. James Rose-hepatologist. There will also be an opportunity for the audience to ask questions of Cushing's patients.

To register for the conference, please visit www.cushings-help.com, or contact Cheryl Farrar at 405-848-6027 for more information.

Body Language From http://www.insidebayarea.com/portlet/article/
html/fragments/print_article.jsp?article=3662759

Article Last Updated: 4/03/2006 09:47 AMExercise affected by blood sugarBy Linda Buch, Body Language Column

Inside Bay Area

Q:I AM a 62-year-old woman, 5-foot-5, 127 pounds with high blood sugar. I've lost 10 pounds since being on a diet, but I want to lose two more pounds. I work out on a treadmill four or five days a week and do some stretching. I've just started with weights, but am not sure what to do.

A: Anytime "hyperglycemia" is mentioned in reference books, "diabetes" is usually in the same sentence. If you aren't already under the care of a medical specialist, seek treatment at once. Other possible reasons for hyperglycemia are:

-Metabolic syndrome (three or more of any of these: abdominal obesity, high triglycerides, low HDL cholesterol, high blood pressure, a fasting blood sugar over 110mg/dL, will yield this diagnosis).

-Cushing's syndrome (a disorder of the adrenal glands, which sit on top of the kidneys).

-Pheochromocytoma (a rare tumor on the adrenal glands).

-Overdosing on vitamin B3 (niacin).

Anyone with high blood sugar should also seek guidance from a registered dietitian.

It is very important to check your blood sugar before you exercise. According to an article by Dr. Russell White, "Check your blood sugar levels before and after workouts and every 20 to 30 minutes during prolonged exercise. (Many activities burn 500 to 600 calories an hour.)

"If your blood sugar is under 100 mg/dL, take a snack containing 15 to 30 grams of carbohydrate before you exercise. If your blood sugar is excessive (over 250 mg/dL for people with type 2 diabetes; over 200 mg/dL for those with type 1), postpone exercise until you bring it down."

Postponing exercise if your blood sugar is high is crucial because during exercise, the body can get desperate for a source of fuel (the body wants to use glucose). Without insulin, that glucose stays stuck in the blood and isn't available to the cells, so the body uses fat instead.

When the body uses fat, chemicals called "ketones" are produced. These ketones get

into the blood and urine and can make you very sick.

Weight lifting is an excellent addition to your workout schedule because resistance training will increase muscle mass and lower your basic insulin levels. If you have no experience with resistance training, I strongly recommend you either take a class or contact the manager of your exercise facility to see about getting some instruction on the equipment.

The easiest way to begin is to use the machines that are organized in a circuit for easy access and efficiency. Begin with light resistance and at least 15 repetitions until your strength improves. As you get stronger, slowly increase the resistance. Varying the workout week-to-week between heavier weight and fewer repetitions and lighter weight and more repetitions, is a good way to improve strength and keep your workout from getting stale. When you are ready to try free weights, hire a personal trainer for a few sessions.

As for losing "two more pounds," fitness, strength and stable blood sugar are vastly more important. Also, when you start to build muscle your weight could actually increase, which in that case is a good thing.

Linda Buch is a certified personal trainer. She will answer fitness questions in Body Language but not individually. Send questions to Body Language, Bay Area Living, 4770 Willow Road, Pleasanton, CA 94588 or e-mail her at linda@ljbalance.com.

If you want personalized workout advice from Linda Buch, and you're willing to be featured in the newspaper, send your dilemma to My Workout. E-mail your name, age, weight, height, hometown, current exercise routine and question/goal to the e-mail or address above.

Nigerian Medical Doctors As Life Savers In US
Meri (drmeriftr on the boards) found this most interesting article about Emory's Dr. Oyesiku:

Nigerian Medical Doctors As Life Savers In US

By Emmanuel Ukudolo

Correspondent, Lagos

The confidence Nigerians have in the nation’s healthcare sector is waning by the day not necessarily due to a dearth of qualified medical personnel, but the paucity of requisite tools needed for world-class practice. In the alternative, Nigerians are jetting out in droves, seeking quality healthcare services from those acclaimed to be the best in the United States of America. But ironically, these specialised professionals were never brought up in the US. They are full-fledged Nigerians, trained in Nigerian universities, but driven out of the shores of Nigeria due to the unfavorable circumstances that the medical profession has found itself.

However, while it is easy for some to jet out for the best of medical attention, millions at home continue to harbor ailments that could take their life in a matter of days. In the first place, accurate diagnosis, in some cases is not even guaranteed and when the ailments have been positively identified, solutions might just be across the equator, as the necessary tools to work with may not be available. Perhaps, the sad story is better illustrated with the experience of Mrs. Tina Iyabode Osuoji.

By Nigerian standard, she wouldn’t pass as a pauper. She is a mogul of international repute. Her husband, Dr. Roland Osuoji is a pediatric surgeon at Libra Hospital, Surulere, Lagos and extends his services to five other hospitals including, the popular Havana, Ultimate, Topaz and Omni.

But the world came crumbling at his very feet, when he discovered that his amiable jewel was going through a rather strange ailment. "She started adding excessive weight, getting weak and eating too much. She would bruise herself easily, while the wound would take a long time to heal", Mr. Osuoji told Saturday Independent.

 Worried by these developments, he took her to a lab in Victoria Island, Lagos where secondary hypothyroidism was diagnosed.  "I thought it was a pituitary problem, but the diagnosis was confirmed by another Lab before I took her to Ilorin", Osuoji revealed.  But the result was not different either. Dr. Ositelu who treated her initially referred the family to Dr. Akinmokun, an endocrinologist who talked her into doing blood sugar test.

"She did it and the blood sugar level was high". It was then that he was told that his wife had Cushing’s Syndrome. "We sent the diagnosis for confirmation and eventually we did what you call MRI in Radmed and it came out to be macro-adenoma of the pituitary".

The ailment, he said gave his wife diabetics, hypertension and obesity. But through Hon. Tam Brisibe with whom he plays golf, he got in touch with Mr. Bode Augusto who assured him that Dr. Nelson Oyesiku, reputed as one of the best Neurosurgeons in the world, practicing in Atlanta could easily solve the problem.

Dr. Oyesiku was an old boy of St. Gregory’s College, Obalende, who studied Medicine at then University College Hospital, Ibadan before jetting out to the US where he specialised in Neuro-surgery. He is currently a Professor of Neuro-surgery at Emory University School of Medicine, in the US.

After identifying where solution to his wife’s problem could be found, the issue became how to raise fund for the US trip. But he and his wife did not wait long as Niyi Latinwo and a group of friends within the Ikeja golfing community and outside contributed an initial sum that facilitated the trip to Atlanta. 

Getting in touch with Oyesiku was however the next obstacle. Dr. Emma Okafor, President, Nigerian Physicians in the Americas (ANPA) living in Cleveland Ohio, got in touch with Dr. Bato Amu, Osuoji’s course mate at the University of Nigeria’s Medical School, Enugu through whom the search for this illustrious son of Nigeria was simplified.

Amu contacted Oyesiku who asked Dr. Osuoji to come over with the wife to America, vowing to do the operation "free of charge". Without promising to accommodate him and his wife, Amu informed him of the need to get an international driver’s license ready since no one would do the driving for him.

"That was how I abandoned my kids, my busy practice, abandoned the golf I love so much and took off to Atlanta via London". A beneficiary of his mother’s philanthropy accommodated the family.  "She gave us accommodation and a car to use", confessed Osuoji. 

Dr.Biyi Odugbesan, another Nigerian Endocrinologist practising in the US confirmed the diagnosis before the result was forwarded to Dr. Oyesiku.

"The first operation was very successful but later developed what is called Saddle Pulmonary Embolism, a problem which if five people have, only one or two will survive. ‘I would have brought back a coffin to Nigeria but the operation was successful". But he told our reporter that there were complications as she had three leaks before the problem was finally solved. We spent five months in Atlanta living on charity", he confessed almost in tears. Besides he had to drive illegally for two months when his license expires. 

His Anger

 "The person that referred us to Oyesiku is a Nigerian, the Endocrinologist is a Nigerian. What we lack here is an enabling environment. Look at the trauma we went through. I drove illegally when my driver’s license expired and had to live on charity. I don’t know how else to convey this message".

Dr. Osuoji wants President Olusegun Obasanjo’s led government to create an enabling environment for good medical practice to thrive in Nigeria. "You can see what is happening here; you bring equipment here, light is not constant, the equipment gets destroyed. We brought in a scan machine in 1988 at the cost of  $1million but it got damaged".

Speaking on her experience, Mrs. Tina Iyabode Osuoji, (the patient) said every doctor she met in the US was highly specialised, "the good doctors the white people were talking about were Nigerians and I started crying. And I said if we have such good doctors there, why do we have to travel several miles to enjoy their services, why are they there and we are dying at home. If things were right, of course, they would be at home", she emphasised adding that all the Nigerian doctors she met were always saying, "home is home".

"There was just not a single soul that told me oh, I liked being here. They will say, ‘you people are enjoying. You don’t know what you have. We wish we were at home, even the doctors that we are saying have so much money to play around with there’’’, she pointed out. Mrs. Osuoji wants people out there to talk to government so that it could face the medical aspect of the nation and she is ready to go any extent to persuade all within reach to get this message across to those in government.

She is angry that one of the doctors who summoned the courage to come to Nigeria was forced to return to the US. "Now, he is looking after other people, I will say that because Oyinbos (whites) are other people. He is taking good care of them and they love him so much", she owned up. 

For now, her concern is the millions of Nigerians that may not be as lucky as she was. "What if I did not rally round, what if relations did not rally round for me. Would I have had this opportunity? I could have died like that. Before I left Nigeria, I did not know Oyesiku, I had never met him and I had never heard about him until that time".  Oyesiku honoured his part of the bargain but the family still has to pay $19,000(N2, 660,000) as hospital fees, $4000 (N560, 000) as MRI fees and about $2,500 (N350, 000) for other investigations. "When the complications came calling, the bill exceeded $200,000 (N28 million) which was written off by the hospital", Osuoji revealed.

 Besides, Dr. Odugbesan, whom she had to see before the Neurosurgeon, was a Yoruba man who equally proved to be another Good Samaritan.  "On hearing that I am from Nigeria, he asked me to come to the clinic. The first day we paid for the card and everything, but thereafter, everything was free. But when we were leaving my husband said, Dr. Odugbensan, can we have your bill? He said when I come to Nigeria, you can buy me groundnut. Can you imagine that? Out there, they strive for their brothers and sisters, they do as much as they can for Nigerians that come there but they are eager to come home but what can they work with", she empathised.

On Oyesiku’s impeccability when it comes to his area of specialisation, Mrs. Osuoji said his black American secretary reported that patients from all over the world were visiting Oyesiku. "She told me that he does about 1000 transphenoidal adenomectomics (brain operations) in a year and in fact, he is so sure of himself. She added that everybody she told that her doctor was Oyesiku replied she’d got the best. She wondered why she would have to travel if Oyesiku was practicing in Nigeria.

But beyond the treatment, she had to buy drugs of $900 (N126, 000) per week, which she said were less expensive in Nigeria. Do you know that at the fourth operation, the bill was already $200,000 (N28 million) after the one we had managed to pay for the initial operation? My husband wrote them that "I don’t have any money but I will pay this bill till I die. I want to pay it even if it is $50 (N7000) every month, I will be sending it from Nigeria because you have at least saved this woman’s life. Do you know that they asked him to send for his pay slip? He called and they sent it by DHL. On the table there, they converted his monthly salary into dollars and said: "Is this what you earn? You said you are a surgeon like Oyesiku and you are receiving this money that is even not enough for our cleaner", they queried.

Stunned by their discoveries, they asked Dr. Osuoji to go with his money and immediately placed his ailing wife under charity. "Every clinic I attended before I left 2nd of March was just charity. Once I approached the clinic, they would punch the computer, what doctor are you seeing? I would tell them. For other people, they would say, where is your insurance at least for the payment. But mine is just charity and that is when they attend to me better and be shaking my hands, ‘Get well soon Mrs. Osuoji’, and they would pet me".

Having survived this far, her desires is for the government of Nigeria to bring Nigerian doctors back home so that they can train the young ones coming up. "If they can’t bring them home then the young ones coming up should be encouraged by turning things around for good", she advised.

Throughout her five months stay, she never lacked anything. "Most of the people that helped were our classmates. Once they heard, the next thing they did was to send down money and I asked them why. But they told me: when you were a student, you were so nice that you could pluck out your eyes for other people, and they said it was now time for them to reward me", she relieved. This same spirit of generosity she argued could also have accounted for the unparalleled prosperity in America.


Newest Bios:
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm
Not Yet Diagnosed Patients
Trisha Trisha is from Texas. She isn't yet diagnosed but has tested positive on several tests so far. Wylie, TX
     
Pituitary Patients
Ana Ana had her first pituitary surgery in May of 2005 and her second in August of 2005. Miami, Florida
Joanne Joanne had pituitary surgery in July 2005 and it's thought that she may have a recurrence. England
Samantha Samantha is not yet diagnosed.  She has a low attenuation enlargement of left adrenal Virginia
    
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm


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:
The Cushing's Store
for all kinds of Cushing's Labeled clothing, US Postage Stamps, coffee mugs, totebags and much more. Great for your endo or Secret Someone.

Order Cushing's Awareness Silicone Bands here.


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 at http://cushings.invisionzone.com/index.php?, http://www.cushings-help.com, http://www.CUSH.org, http://www.cushings-support.com and http://www.cushingsonline.com.

See the list of participating merchants »

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Each new member who joins iGive
and shops will earn an additional $5 for the
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of each purchase benefits Cushing's Help and Support!).
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something for everyone!


Thank you so much for your support.



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:

April 6-8, Oklahoma City, OK, Cushing's Awareness Day Medical Forum, More info here »

April 28, Washington DC Metro Area, Saturday lunch, More info here »

June 24-27, 2006, ENDO 2006, Boston Convention & Exhibit Center.
Plenary Lectures Announced for ENDO 2006,   Boston, Massachusetts, June 24-27

ENDO 2006 not only delivers four full days of the latest advances in endocrine research and clinical practice, but also plenary lectures by sixteen of the world's foremost leaders of endocrinology. For up-to-date information on ENDO 2006, from the scientific program to registration, visit www.endo-society.org/endo06
 
The 2006 plenary topics and speakers are:

* The WHI Hormone Therapy Trial:  Timing is Everything
     JoAnn Manson MD, DrPH, Brigham & Women's Hospital/Harvard Medical School

* Estrogen & Cardiovascular Disease
     Michael Mendelsohn, MD, FACP, Tufts University/New England Medical Center

* Diabetes, Obesity & the Brain
     Michael Schwartz, MD, University of Washington-Seattle/Harborview Medical Center

* Neuroendocrinology of Critical Illness
     Greet Van den Berghe, MD, PhD, Katholieke Universiteit Leuven, Belgium

* Prolactin & its Receptor: More than Just the Lactation Mediator
     Paul Kelly, PhD, Faculté de Médecine Necker, INSERM, France
     (Gerald D. Aurbach Award Lecture)

* Thyroid Hormone & Brain Development
     Juan Bernal, MD, PhD, Instituto Investigaciones Biomedicas, Madrid, Spain

* Steroidogenesis: General Lessons from Rare Diseases
     Walter Miller, MD, University of California-San Francisco
     (Clinical Investigator Award Lecture)

* Genetic Pathways of Cell Death
     Tak Mak, PhD, University of Toronto, Ontario, Canada

* Metabolic Syndrome
     Richard Bergman, PhD, University of Southern California

* Nuclear Receptors & Endocrinology
     Mitchell Lazar, MD, PhD, University of Pennsylvania School of Medicine
     (Edwin B. Astwood Award Lecture)

* Estrogens
     Benita Katzenellenbogen, PhD & John Katzenellenbogen, PhD, University of Illinois
     (Roy O. Greep Award Lecture)

* Fetal Basis of Adult Disease
     Susan Ozanne, PhD, University of Cambridge, United Kingdom

* Embryonic & Neural Stem Cells: Potential for Spinal Cord Repair & Other Disease States
     John Kessler, MD, Northwestern University

* Applications of Biomaterials to Regenerative Medicine
     Robert Langer, ScD, Massachusetts Institute of Technology

* Cloning
     Gerald Schatten, PhD, University of Pittsburgh School of Medicine

* Sex Determination
     David Page, MD, Massachusetts Institute of Technology
 

For up-to-date information on ENDO 2006, from the scientific program to registration, visit www.endo-society.org/endo06
 

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

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.

The chatroom is available through http://www.cushings-help.com/chatroom.htm.

The very first time you go in, you will have to register for this chat. Although you may use your user name and password from the message boards, you will still need to register those before being allowed into the room.

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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