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The Cushings Newsletter

To Share To Aid To Care

The Cushings Support and Research Foundation, Winter, 2010

Cushings Patient Education Day Audio and Slides still On-line

If you havent yet had a chance to view the presentations from the February, 2010 Cushings Patient Education Day, they are still available for viewing from our website - under Whats New. These very informative presentations include: Introduction to the Pituitary Gland and Cushings Dr. Larry Katznelson, Stanford Univ. Left to Right: Karen Campbell, Cindy Zacharyasz, Lee Carlson Diagnostic Testing for Cushings Dr. Lewis Blevins, UCSF Pituitary Surgery for Cushings Dr. Martin Weiss, USC What to Expect During Recovery Dr. Lewis Blevins, UCSF Radiation Therapy Dr. Mary Lee Vance, UVA Medical Therapy for Cushings Dr. Anthony Heaney, UCLA Effects of Cushings on the Brain Dr. Andre Lacroix, Univ. of Montreal Cushings and Quality of Life Dr. Mary Lee Vance, Univ. of Virginia

CSRF Exhibits at Endo 2010

For the 15th year in a row, the CSRF exhibited at The Endocrine Societys annual meeting! This years meeting was held in San Diego, CA, June 19-22nd. As usual, this meeting was well attended by both international and national endocrinologists and endocrine nurses. This exhibit continues to be an excellent opportunity to let the endocrinology community know that there is an organization to support those with Cushings. If you are interested in the many excellent scientific presentations, you can view the abstracts at Select Meetings, then Annual Meeting, then Endo 2010 Meeting Website.

Thus far, over 340 people have viewed over 150 hours of these presentations.
Thank you again to Corcept Therapeutics for sponsoring this event.

2011 Membership Dues

Yearly Membership dues are now due. Please use the enclosed envelope to send in your donation. Or, you can pay your dues on-line through our website at Log into the Main Area of Member Services and select Membership Dues on the sidebar.
If you joined after September 1, feel free to make a donation, but your dues are not due until next fall. Thank You For Your Continued Support!
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Inside This Issue Summer Outreach New Members Post-Surgical Recovery Survey Results Quality of Life Survey Doctors Answers Research Studies Patient Stories Donations

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CSRF Summer Outreach

By Ellen K. Whitton One of my roles as a new Director is to increase outreach for CSRF, to raise awareness of Cushings both among medical practitioners and the general public. Ably assisted by Carrie Pledger, I staffed a booth at the American Diabetes Associations Annual Scientific Sessions, a 4-day conference in Orlando, Florida. There were somewhere around 17,000 people in attendance, from all over the world. One endocrinologist from India knew about CSRF from one of his patients! The experience of meeting endocrinologists from around the world highlighted the need to have our literature in other languages, particularly Spanish. I found that the endocrinologists there were already familiar with Cushings, although they were interested to learn that CSRF is available as a resource to support their patients. I met the publisher of Diabetes Health magazine, and we have been offered the opportunity to write an article for them. The most valuable contacts we made there were with diabetes educators and nurses. These are the folks who really spend time with diabetic patients, and are well-placed to notice possible symptoms of Cushings. A nurse from the Navy told me she always checks patients with diabetes for thyroid problems, and after meeting us, was thinking about also checking cortisol levels. I came away from this event feeling that it is with these diabetes professionals that we can have the most impact. In August, I attended the annual convention of NAAFA, the National Association to Advance Fat Acceptance in San Francisco. This is an organization committed to ending prejudice against people because of their size, and I thought that among a group of such large people, there might be undiagnosed Cushings patients. This convention was smaller than anticipated, with about 80 people present. I had the opportunity for long conversations, and it became apparent that many extremely heavy people avoid doctors entirely because of bad exPublished by The CSRF

periences of being treated punitively for their weight. I met Marilyn Wann, a well-known activist within the size acceptance movement, and spoke with her about the need for anyone contemplating bariatric (weight-loss) surgery to have an evaluation by an endocrinologist. Although this was a small group, I think it was an unusual and valuable opportunity to provide information to people we might not otherwise reach. So this summer I had the experience of doing outreach to both a large group and a small one. It is extremely difficult to quantify the success of these efforts; even at a small event, you never know who might pick up a leaflet and save a life. So I encourage CSRF members who want to get involved to look for opportunities to speak with the public. You dont need to be an expert. At the event in Orlando, an endocrinologist came up to me and said, So, how accurate is midnight salivary cortisol testing? I said, I dunno - Im a patient! He burst out laughing and said, Well, at least youre honest! We are not qualified to give medical advice, but we can use our own experience to raise awareness, and direct people to the real experts. If youd like to talk about doing some outreach, please contact me at:

Left to right: Carrie and Ellen at ADA in Orlando

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Welcome to a Few of Our New Members

They would love to hear from you! Wendi Sulphur Springs, TX 10yo son with possible Cushings Susan Chesterfield, MO Pituitary tumor, 7/10 Elana Ellington, CT Adrenal tumor, 5/10 Teresa Harvest, AL Adrenal tumor, 2010 Wendy Frisco, TX Katherine Anaheim, CA Pituitary tumor, 1995 Daniel Beaver, PA Ectopic tumor Unilateral adrenalectomy, 2007 Reonee Copley, OH Lost a loved one due to Cushings Wants to help others Jennifer Bloomfield Hills, MI 313-930-7200 Pituitary tumor, 8/10 Crystle New Milford, CT Pituitary tumor, 2010 Michael Florence, AZ Adrenal tumor, 5/10 Rebecca Rockaway, NJ Pituitary tumor, 2010 Janka Sfantu Gheorghe, Romania Pituitary tumor, 2010 Melissa Ft. Lauderdale, FL Pituitary tumor, 10/08 Jo Exmouth, Devon, United Kingdom Pituitary tumor, 11/10 Stephanie Kirkland, WA Pituitary tumor, 1985 when 12yo Carolina Brandon, MS Pituitary tumor, 2005 Pituitary tumor recurrence Susan Melbourne, FL Adrenal tumor Nicole Mueller Indianapolis, IN Diagnosed 9/10 Mark Lee, MA Pituitary tumor, recurrence Radiation, 2008, Wants to help others Karen District Heights, MD Adrenal tumor, 9/10 Miri Los Angeles, CA Pituitary tumor, 3/10 Justin Buffalo, NY Pituitary tumor recurrence, 2010 Unsuccessful Pituitary surgery Lorie Spurger, TX Adrenal tumor, 2010 Joanne North West River Newfoundland and Lab Adrenal tumor, 2010 Andrea New York, NY Adrenal tumor, 12/09

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Post-Surgical Recovery in Patients with Cushings: Results of an Open-Ended Survey Created by the CSRF
By Brent Abel from the Research Group of Lynnette Nieman, M.D. National Institutes of Health, Bethesda, MD
As Dr. Mary Lee Vance described in the summer 2009 newsletter of the Cushings Support and Research Foundation (CSRF), post-operative recovery from Cushings syndrome can be long and frustrating. Indeed, previous work has shown that patients continue to have subnormal quality of life even after pituitary and adrenal gland function return to normal. To better understand the recovery process in patients surgically treated for Cushings syndrome, the CSRF invited surgically-treated members to complete an open-ended survey about their experiences. Our research group then clustered the responses to determine how often specific topics were mentioned. By analyzing this open-ended survey, we were able to determine the most significant issues to CSRF members based on the topics that they mentioned in their responses. Of the 94 CSRF members who participated in this survey, 84% reported overall negative recovery experiences. Respondents reported that they had trouble with (from highest to lowest percentage): lethargy, joint pains, problems thinking (such as difficulty paying attention or processing information), body weight, and depression. Patients also were concerned about the lack of information they received about the recovery process. Decisions to taper off exogenous cortisol replacement therapy (CRT) were made by the physician alone about twice as often as mutual decision-making between the patient and physician. Though the median time frame among 69 participants to discontinue CRT was 11 months (25-75 percentile of 6-18 months), the median time frame to perceived full-recovery for 49 participants was 20 months (25-75 percentile of 12-27 months). However, one participant wrote in the survey response that the recovery process was, nothing as bad as I had read or expected. Many survey respondents also noted coping mechanisms utilized during their recovery process. The most common mechanism was support from family, friends, and physicians. Other mechanisms included: support groups, exercise, resting, completing activities considered normal before the onset of Cushings syndrome, pain relief, religion, and entertainment. One
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participant wrote that, sad to say, had I not met [my endocrinologist], I probably would have committed suicide because I was so depressed, anxious, etc, and had given up hope. The value of family, friends, and physicians in the recovery process suggests that additional patient and family education, as well as improved physician understanding of the recovery process, might improve patient satisfaction and perceived quality of life during recovery from Cushings syndrome. Though these results provide insight into the daunting challenge faced by patients recovering from Cushings syndrome after surgical treatment, there is still much more to be learned. To build upon our current knowledge of the recovery process, our research group has created another patient survey with fixed responses to specific questions, to provide us with more quantifiable information on the patient recovery experience. We invite all surgically-treated CSRF members to complete this new short survey at http:// Please complete this survey, even if you completed the earlier one. By learning more about the recovery process, we hope to identify specific ways to improve the patient experience during recovery. We hope to publish these results in a medical journal and to provide a synopsis of the information in the CSRF newsletter. Thank you for your help.

Editors Note: The research group of Dr. Lynnette Nieman has worked to improve testing for the diagnosis and differential diagnosis of Cushings syndrome. In particular, use of diurnal salivary cortisol, corticotropin releasing hormone (CRH) test and inferior petrosal sinus sampling have been important contributions from the NIH. Our current research focuses on the localization of ectopic ACTH-producing tumors, the patient experience and quality of life during and after Cushings syndrome, and the role of cortisol in the metabolic syndrome.

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Have you recovered from Cushings syndrome after surgical treatment? Please share your experiences during the recovery period!
Researchers at the National Institutes of Health have created a survey to gain more insight into the recovery process in patients surgically treated for Cushings syndrome. The survey will take about 15 minutes to complete and no personal information will be requested.

To take the survey, please go to the website below to begin:
Please direct any questions to Nicola Neary at

National Institutes of Health

Public Health Service
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Doctors Answers
By Dr. Mary Lee Vance
Question: I recently was diagnosed with a fatty liver. Does this present with Cushings? Answer: Fatty liver is most commonly related to poorly controlled diabetes mellitus, with high blood lipid tests (cholesterol, triglycerides). It is not a "presentation" of Cushing's, but may be a consequence of Cushing's. Question: I had my surgery in Feb 2007. I had an inguinal hernia in May 2008 and have recently been diagnosed with a large paraesphogeal hernia that requires surgery. I wonder if I have had these hernias due to the amount of time I had Cushings Disease before being diagnosed? Answer: There is no way to know if the hernias are a consequence of Cushing's - although Cushing's does cause a negative effect on supporting tissues (thinning of the skin), one can speculate that this may be a consequence of Cushing's. However, in the many patients with Cushing's that I have taken care of , this has not occurred. Question: I am taking steroids to control another medical condition. Will taking the entire dose in the morning help minimize the side effects? Is there anything I can do to minimize the side effects? Answer: If a steroid is given for a condition other than replacement for adrenal insufficiency, the dose is usually higher - the most commonly used steroid is prednisone which can be taken once a day. However, if the condition requires continuous steroid treatment (such as severe asthma), the drug should be taken as prescribed. If the steroid is hydrocortisone, this is shorter acting and should be given twice a day. The frequency of administration is not the real issue, it is the dose of the steroid. The bottom line is the lowest effective dose of the steroid that controls the condition is the goal. To minimize the side effects of steroid medication: a healthy diet, with adequate protein, and regular exercise (swimming is a good idea,; minimizes effect on joints), a multiivitamin, calcium and vitamin D (to reduce the risk of bone loss and osteoporosis), trying to control the increase in appetite caused by steroid therPublished by The CSRF

apy (very difficult) and the resulting weight gain. The bottom line is that a steroid may be necessary to treat several disorders and there are negative consequences, particularly on muscle mass and muscle function and on bone density. If a patient requires long term steroid treatment, it is a good idea to have a bone density study (DEXA) and if there is bone loss, treatment for this is available and a good idea. If a patient requires chronic steroid treatment (several months), this causes the pituitary gland and the adrenal glands to stop producing necessary hormones (ACTH, cortisol) that are necessary for life. It is important that the steroid not be stopped abruptly because this can be life-threatening. If the plan is to discontinue the steroid, it should be done gradually over weeks or months (depending on the medical condition and the dose of steroid) and supervised by a physician who is familiar with withdrawing steroid treatment. Question: I have Nelson's syndrome (aggressive enlargement of an ACTH secreting pituitary tumor following a bilateral adrenalectomy) and radiation has not been effective. The tumor is creating problems with my vision. What are my treatment options? Answer: Since the pituitary tumor has enlarged to affect the nerves that control eye movements or eyesight, the first line of treatment is surgery to remove as much of the tumor as possible. Medical treatment with the oral chemotherapy temozolamide (Temodar) can be tried. Two recently published studies, one from France and one from the University of Virginia, showed that patients with different types of aggressive pituitary tumors (including some patients with Nelson's syndrome) had a 50% "response rate" (either a decrease in tumor size or no growth over time). Because this is a chemotherapy drug, treatment with Temodar should be prescribed by and supervised by a Neuro Oncologist.

Editors Note: Dr. Mary Lee Vance, M.D. is Professor of Medicine and Neurosurgery at the University of Virginia, Charlottesville, VA.

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Research Study - New Imaging Modalities in the Evaluation of Patients with Ectopic Cushing's Purpose: Cushings syndrome is caused sometimes by ectopic ACTH secretion. Finding the exact location of the tumor making extra ACTH is necessary for successful surgical treatment. In 10% to 20% of patients, Cushing Syndrome is caused by ectopic production of the hormone ACTH. Often the ectopic ACTH is produced by a tumor of the lung, thymus, or pancreas. However, in approximately 50% of patients the tumor cannot be found even with the use of extensive imaging studies such as CT, MRI, and nuclear scans (111-indium pentetreotide). Positron emission tomography (PET scan) using DOPA has the ability to detect pathologic tissue based on physiologic and biochemical processes within the abnormal tissue. Participating patients will be admitted to the Clinical Center at the National Institutes of Health and will receive a standard evaluation of Cushing syndrome and its cause. These tests include MRI of the pituitary, blood, saliva and urine tests, CRH stimulation and dexamethasone suppression test, and inferior petrosal sinus sampling (IPSS). Most of these tests will be done on our inpatient unit or in our day hospital. If the testing indicates a pituitary tumor making ACTH, patients will be offered surgery at the NIH. If the testing indicates ectopic ACTH secretion, we will perform standard studies to look for the tumor, as well as two research studies, F-DOPA PET and 3T MRI. The 3T MRI has a stronger magnet than the more common scanners and might give a better picture. Imaging studies of the neck, chest, abdomen and/or pelvis, as indicated by the history, physical examination and biochemical tests will be done by Octreoscan, CT and/or MRI scans. If the standard imaging studies identify a clear-cut tumor, we will consider surgical exploration, usually at a later admission. If only the research studies are positive, we will not do surgery but will continue to follow with imaging at 6-12 month intervals, and treat the Cushing syndrome with medication or adrenalectomy as needed. Criteria for admission into the study: Age 18-70 years Cushings syndrome caused by ACTH secretion confirmed biochemically No severe heart, liver, or kidney disease or severe active infection No known allergy to [111In-DTPA-D-Phe]pentetreotide or other somatostatin analogues or x-ray dye Body weight less than 136 kg There is no charge for admission and testing at the NIH. For more information or subject referrals contact: Lynnette Nieman, M.D. NICHD/National Institutes of Health Building 10, CRC, 1 East, Rm 1-3140 10 Center Dr, MSC 1109 BETHESDA MD 20892-1109 Fax: 301-402-0884 email:
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Research Study - Mifepristone Symptomatic Treatment of Cushings Syndrome Caused by Ectopic Adrenal Cortcotrophin Hormone (ACTH) Secretion
Purpose: Cushings syndrome is caused sometimes by ectopic ACTH secretion. If an ectopic tumor cannot be found or if surgery cannot be done, medicines that reduce cortisol production can be given. Mifepristone is a drug that blocks the action of cortisol in the body. High daily doses of mifepristone have been used safely to treat a few subjects with Cushings syndrome as well as certain kinds of cancer, gynecological diseases, and psychiatric disorders. No major safety issues have been raised from these clinical studies. In addition, mifepristone has been used safely in many countries for more than ten years at a single dose of 600 mg to terminate early pregnancy. You will take mifepristone by mouth three times a day. The dose of mifepristone will be increased every week until you reach the highest dosage allowed, or your symptoms are clearly improving. You will stay in the hospital during this period. Thereafter, you will return to the hospital every three months for the assessment of your condition. You will be able to take mifepristone for up to 12 months if you continue to do well. During the study period you will undergo physical examination, electrocardiogram and a scan to measure body composition intermittently, and you will fill out several standard questionnaires. Blood will be drawn periodically to measure hormone levels and to monitor the safety of mifepristone. If you are a woman, ultrasound examinations of the uterine lining will be performed. The aim of this study is assess whether mifepristone will improve high blood pressure, diabetes or other symptoms of Cushings syndrome in subjects with ectopic ACTH secretion. Criteria for admission into the study: Age 18 to 75 years Cushings syndrome caused by ACTH ectopic secretion confirmed biochemically Glucose intolerance or diabetes and/or hypertension that is considered to be caused or worsened by the hypercortisolism Women should be sterilized, post-menopausal, sexually inactive or willing to use barrier methods of contraception throughout the study. Subject willing to return to NIH during the full course of the study No recent changes in corrective treatments for diabetes, hypertension or depression No severe cardiovascular, liver or renal impairment Patients must discontinue all approved or experimental steroidogenesis inhibitors, adrenolytic agents or somatostatin analogues within four weeks of admission Body weight less than 136 kg Number of patients-35 Location: National Institutes of Health, Bethesda, Maryland Enrollment Period: 2007 and ongoing For more information or subject referrals contact: Marina Zemskova, M.D. Telephone (301) 594-3385 Email: Fax: 301-402-0884 NIH/NIDDK-NICHD, 10 Center Drive, Room 6-3940 Bethesda, MD 20892
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Patient Stories
Our son, Hunter, has always been very active, enjoying playing baseball and football as a young boy, and more recently in high school. In retrospect, we noticed some changes when Hunter was 11 and was in 6th grade. But, he was feeling well and staying active, so we thought any changes we were seeing was just due to the normal time of puberty. During Hunter's regular yearly physical in July 2009, when he was 15 and in 5th Grade 10th grade, his primary care physician referred us to the University of Iowa Endocrinology Department to see why he had not grown in nearly three years. We had an appointment scheduled for November 30, 2009, but the hospital called and moved it up to August 26. We met with Dr. Liuska Pesce, a pediatric endocrinologist. She ordered several blood tests, saliva samples, 6th Grade to test for numerous things, including Cushings, and an x-ray of the left hand. We werent quite sure what it meant yet, but the first round of blood work came back showing high ACTH and high cortisol levels. She ordered more tests and all came back with the same results. Dr. Pesce suspected that he had Cushing's Disease. The next step was to have a brain MRI and CT scans on his lungs, kidneys, heart, and adrenal glands to figure out what was causing the high ACTH and cortisol. Hunter had an MRI and CT's on Monday September 21. Dr. Pesce called us and told us that she had 10th Grade some good news and bad news. The good news was that his CT scans all came back clear. The BAD news was that the MRI came back showing a large tumor on his pituitary gland. The tumor measured almost an inch in diameter. The pituitary gland is about the size of a pea, the tumor measured about the size of a golf ball or a walnut. This is when mom and dad started to worry. Our next visits to the hospital included a stop in Neuroophthalmology. There Dr. Longmuir did a series of eye tests and found that Hunter's eye sight and his peripheral vision had not been affected yet. Dr. Longmuir then showed us the MRI and explained where the tumor was and that the tumor was putting pressure on the optic nerve. Hunter was lucky that he had not begun to have vision problems. Then, another visit to Dr. Pesce, where she explained the test results and the treatment plan. Next we spoke with Dr. GreenPublished by The CSRF

lee, the neurosurgeon. He explained the MRI scans and described the surgery. Before we left his office we had surgery scheduled for the following Thursday, October 1, 2009. They said the surgery will take about 5 hours. Things were moving fast. We also had an appointment with Dr. Graham, in Otolaryngology (ENT), who explained that the ENT surgeons go in first and get the neurosurgeon to where he needs to be to do his job of removing the tumor. We arrived at the hospital that next Thursday at 10:45am and were taken to a room to wait... The surgery was scheduled for 12:45pm, but earlier surgeries were running late, so it was 2:45pm before things got started. Our pastor said a prayer, and Mike and I gave Hunter big hugs and then he left for surgery. About 7:20pm Dr. Greenlee came in and said that the surgery went well and by 8:45pm we were in the room with Hunter in Pediatric ICU. He was very thirsty, but couldnt have any fluids yet and his blood pressure was higher than they wanted. Hunter said he had the worst headache ever, but he hadnt lost his sense of humor. By Friday morning, Hunter was off the high blood pressure medicine and his blood pressure was great. 120's/60's 70's vs. the 190's/90's the night before. His sodium levels were also where they should be. The doctor cleared Hunter to eat, so he ordered chicken strips and chicken noodle soup and said he was getting really HUNGRY. Unfortunately, when they removed his arterial line, his wrist became very swollen and he couldnt eat until after they determined that his wrist didnt need surgery. Finally he was able to eat! Hunter had another MRI and the Neurologist said the MRI looked good. So, we came home on Saturday and were thankful to catch up on some much needed sleep. Hunter came home from the hospital on 45mg of hydrocortisone a day to keep his cortisol levels elevated so that he didnt feel sick. Hunter was feeling well and actually went back to school on October 6th, just 6 days after his surgery!! Amazing. On Monday, October 12, we had an appointment with Hunter's endocrinologist for results on the post-op ACTH levels. Before surgery his levels were running around 116. Normal numbers should be between 9-52. One day after his surgery his level was 13 and three days later it was 20. His blood pressure at this point is 146/77, probably due to the dosage of hydrocortisone. Dr. Pesce lowered Hunter's medication to 15mg hydrocortisone daily hoping this would help his BP. On October 31, Hunter was approved to go on growth hormone therapy! It seemed pretty simple to do the injections and Hunter gave himself shots every night before he went to bed. Good thing needles don't bother him! He was excited about starting the growth hormone therapy and hoped
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to see some good growth! Hunter went back to normal activities like gym class! Sitting on the sidelines was not easy for him. He was looking forward to getting back in the weight room to get in shape and gain some strength and hopefully some big muscles. :) So far the road to recovery has been pretty smooth and we hoped that it would continue that way. We were so thankful that the doctors were able to diagnose Hunter so quickly and that they found something and were able to take care of it. From December through February, Hunter had many tests done. His vision remained the same as before the surgery, which was good news. He was found to be hypothyroid, so he started thyroid replacement. A follow up MRI at 6 months looked great, and by mid-Feb, Hunter was able to discontinue his replacement hydrocortisone! By April, a lot of Hunters symptoms from the Cushings Disease disappeared. He no longer bruised easily, lost fat, gained muscle, and was feeling less tired and weak. His blood pressure was now normal. He had grown 3 inches since the surgery! He had another bone scan and his bone age was 14.3 years. His new predicted adult height was 54, which is two inches taller than previously predicted. While 54 is still not ideal, it is much better than the 410 he started off at. In the whole scheme of things, being short is not the end of the world. In May, a visit to the ENT showed that Hunter had very full sinus and a polyp, which led to a referral for full allergy testing. So, they tested for allergies and didnt find any! But, they also did a chloride sweat test and that turned out abnormal. That led to a scare that Hunter might have Cystic Fibrosis! After other testing, we were very thankful that Hunter did not have Cystic Fibrosis! Hunter felt well, was happy, and continued to amaze us every day. He handled and still continues to handle his illness well. Im not saying that he didnt have his days where he questioned why all of this has happened to him, but for the most part he tries to keep a POSITIVE ATTITUDE. We continued saying our prayers that everything would continue to go well and that the tumor wouldnt grow back. I keep telling Hunter that God has a plan for him and that he never gives one more than they can handle. Unfortunately, in September, Spring, 2010 2010, Hunter had a routine checkup with his endocrinologist at the University of Iowa. Lab work from this appointment came back with his blood cortisol level being a little on the high side. Dr. Pesce ordered a 24 urine test and also the three midnight saliva tests to see how those cortisol levels would come out. Those also came back higher than normal. Some of the other symptoms were starting to resurface again as well... weight gain during
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football season, acne, joint aches, backaches, headaches, and noticing he'd been a little more tired than normal. Dr. Pesce told us that her thoughts were that the tumor was growing back. Hunter had the MRI Friday, October 22. We met with his surgeon, Dr. Greenlee and learned that sure enough the tumor was back. It wasnt as big as last time, measuring about 12mm, but big enough to be creating problems. Hunter had his second surgery on October 29, 2010. Dr. Pesce said that with pediatric cases of Cushing's Disease it is not uncommon to have two surgeries. We all just prayed that this surgery would take care of this stubborn tumor and that it would be gone for good. This time surgery lasted 4 hrs and the ENT said that his part of the surgery took longer than he expected since most of the bone had already grown back from the Fall, 2010 1st surgery. Basically he had to open up the path again for Dr. Greenlee to remove the tumor. The doctors said that this tumor was different than the first one that was removed. He said it just kind of fell apart. Maybe that is a good sign? The first one was more cystic. He did not have a spinal fluid leak like during the previous surgery so there was no need to remove a plug of fat from his abdomen this time. Later that afternoon, Hunter started throwing up, and it was all blood! Talk about SCARY. Not to worry though, it was just drainage from the surgery and when blood settles in your stomach you will get sick. Sunday morning the neurosurgeon sent us home. Amazing that after a surgery like that you only stay in the hospital a couple of days! Hunter was very happy to be going home. Needless to say, we are praying that this is the end of the road for this stubborn tumor. The MRI taken after surgery supposedly looks good and his ACTH and cortisol levels are not high, but not low. Dr. Pesce cannot tell from these numbers if there is a cure yet or not. Only time will tell. She said that Hunter can discontinue taking replacement cortisol because his body is producing it on its own. We decided that for now we are going to hold off on the growth hormone treatment. As far as we know there is no evidence that taking growth hormone injections was the cause of the tumor growing back, but there is also no evidence to prove that this wasnt the cause. Wed rather not take any chances. Thank you to everyone for your continued support and prayers. We live in an awesome community and are blessed with wonderful friends and family. Amber
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"YOU! DO! NOT! HAVE! CUSHING'S!" My endocrinologist yelled after I requested more testing despite three negative 24 Hour Urine Free Cortisol tests and a below normal Low Dose Dexamethasone test. "YOU! CAN'T! PROVE! THAT!" I yelled back while my mind desperately reeled for more arguments, more statistics, more anything to get another test for Cushing's. I stuttered as I rapidly fired off findings by Cushing's researchers who had reported patients with Episodic or Cyclic Cushing's. "As long as the entity of Cyclic Cushing's exists, and I continue to have Cushing's symptoms, you HAVE to keep testing!" I ended. During my tirade he had turned around and leaned against the counter in the exam room, head down with hands on either side of my open file. He stood silently for so long I flinched slightly when he took a breath, turned around, looked me straight in the eye and said quietly, "Do you know how rare that is?" My eyes watered and I looked away. "That still doesn't mean I don't have it." Rewind about six weeks to my first visit, same doctor, same exam room. As the endocrinologist sat down I started relaying my list of symptoms (at this point the onset had been about 4 and 1/2 years), current and past medications, family history, surgeries and hospitalizations, all known by heart from the many, many other times I had been in a new doctor's office. Before I was even halfway through my recital, he held his hand up to stop me and asked, "Have you ever heard of Cushing's Disease? I haven't run any tests on you yet, but you have it." He continued to explain what Cushing's Disease was -- ACTH, pituitary, adrenal, but all I heard was the word "TUMOR". No. Absolutely not. I do not have this. I cannot have this. I came here because my sister and mother were both just diagnosed with Hypothyroidism. That's what I have, no way did I have a damn tumor! This guy is a quack. I'll make a follow-up appointment to be nice and cancel it by telephone tomorrow. But as he began asking questions, it was as if he was telling me my own story: "Do you have any purple markings? Have you noticed your arms or legs becoming weak? Has your face changed shape along the jaw line?" The list goes on. I did indeed have all the symptoms he asked about, but never thought them relevant enough to report to a doctor, nor did any doctor ever bother to ask me about them. Our eyes met as the feeling in the room shifted from the boring, routine office visit to an eerie, yet exhilarating event. I was terrified, but fascinated. Could there really be one cause to all my symptoms? If so, could I be fixed? And most importantly, I pushed through the shock to ask, "Is" "Yes," he said and smiled, "But it's completely curable." The next year and a half was filled with 24 hour Urine Free Cortisol collections, Midnight Salivary Cortisols, MRI's, CT's, etc. I became increasingly debilitated, making
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multiple trips to the Emergency Room with kidney stones and being hospitalized with what should have been minor infections. A doctor in the hospital declared me "the sickest 26 year old he's ever seen!" Yet no Endocrinologist, Cushing's Specialist or Neurosurgeon would agree to treat me because my results were all over the board. Some tests came back definitively negative for Cushing's, some tests came back toward the high normal or slightly above normal limits for Cushing's, and some came back soaringly high positive for Cushing's. I had a mathematician run statistics on my test results using conservative estimates of sensitivity and specificity. The result? I could prove with over 99% accuracy that I both did and did not have Cushing's Disease. Great. I had the dreaded Cyclic Cushing's Disease. Now all I needed was a doctor who would treat it. After multiple arguments with my local Endocrinologist for a referral, I finally ended up in the office of a Neuroendocrinologist at Mt. Sinai School of Medicine. She ran her own tests with the same results -- negative, borderline, positive. I even ended up with a negative 24 hour Urine Free Cortisol and a positive Midnight Salivary Cortisol on the same day! Apparently, I had a tumor that produced cortisol at night, but not enough cortisol to show up consistently on 24 hour Urine Free Cortisol tests. However, the Neuroendocrinologist and Neurosurgeon were still hesitant to treat my condition. I pulled every stunt I could possibly think of to convince those doctors to treat me. I argued, I threw journal articles at them, I gave them statistics, I did and said outrageous things to make them laugh, I offered to sign away all my rights to the point that they could walk into the operating room roaring drunk and I couldn't sue them. I so doggedly pursued them that they probably could have had me put away for harassment. I knew I was pushing it -- with every move a voice in my head screamed "What are you doing, crazy woman?!?!", but something in my gut would not allow me to stop. It was as though my brain was put on autopilot while some kind of strange intuition in my gut took over -- it told me I was dying quickly and I needed to do whatever it took to get treatment as soon as possible. Nothing else mattered. Nothing. About a year and a half after first hearing the word "Cushing's" I walked into the Neuroendocrinologist's office again carrying test results with the same pattern as always -one negative, one borderline, one positive. I felt like crap and didn't have the energy to fight that day. She made some notes about my blood pressure being higher than the last time she saw me, my hair loss, and the few pounds I had gained. She started the same speech about her hesitancy to treat me because I had such inconsistent results. To this, I sat back up from where I was laying on the exam table and wearily responded by naming the risks involved in the sur617-723-3674 web site: Page 10

65 E. India Row, Suite 22B, Boston, MA 02110-3389

gery along with their respective statistical likelihood of occurrence, and said that I understood I could die and/or be disabled by this, and that it was my choice to take this risk. I saw her face change as she reconsidered. "What would you do if we go ahead with surgery and you remain sick?" she asked. "I would be disappointed, but at least then we'll know we need to look somewhere else for a cause," I replied, "But we can't do nothing while I sit here and waste away! I'm 26 years old and almost completely disabled. No one can say why, but I have a good hypothesis and if it's wrong we have to know so we can start looking for the real problem!" Exactly one month later my parents and I entered the pre -surgical intake lobby at Mt. Sinai Hospital. After the usual paperwork and insurance business, a nurse took me back and I changed into a hospital gown and put the hospital socks on and got set in a hospital bed. This was the real deal. No going back now. I was terrified, but hopeful they would find the tumor that had, up to this day, been elusive. The next thing I remember is hearing the neurosurgeon's excited voice saying "Are you awake? We opened you up and the tumor was right there! We got every bit of it! We got it!" If I didn't hurt so badly, I would have cried for relief. Instead, I tried to convince them to increase the painkillers because I was absolutely overwhelmed with pain, but I couldn't talk so it just ended up sounding like E.T. saying Ooooooouch! Ooooooooouch!" The next few months are a blur of indescribable pain. I was no stranger to pain before -- kidney stones, aura migraines, etc. But there was nothing to prepare me for the pain of cortisol withdrawal and there was nothing to prepare me for just how long the pain would last. I thought about pounding myself on the head and knocking myself out. I thought about begging for some doctor to put me in a coma for a few months. I even thought about asking for the tumor back! Somehow, I managed to get through the first couple months' worth of pain. Around the third month or so the pain got to a tolerable level. I am only 9 months postsurgery as of this writing, and still experience some pain and other Cushing's symptoms. However, I am at the point now where I can see the other side -- life without Cushing's -- and get excited about it. Please feel free to contact me with questions or concerns at Thanks, Marie

My story is very similar to the others that you'll see here, with one notable exception; I'm a man! I find it interesting that the vast majority of experiences here are from women. I understand that Cushing's is more common in women, but not to this extent. I suppose men just aren't as comfortable sharing their experiences. Another difference for me is that I never really felt sick prior to my diagnosis. I gained about 20 pounds, got the "moon face", and spindly arms and legs, but didn't suffer from depression or fatigue to the point where it was noticeable. I was living overseas for the past few years and wasn't too impressed with the health care there. My thin skin and easy bruising was written off by the dermatologist as being caused by excessive exposure to the sun in my younger years. A psychiatrist said my memory loss was due to job-related stress. My easy cutting and bleeding were deemed to be "normal" for someone my age (47). When I broke a Cushings bone in my foot for no apparent reason, no-one thought much about it. However, the worst thing was my repeated injuries to my back, which were never x-rayed, and deemed to be muscular and referred for physiotherapy. While I wish I had been diagnosed sooner, I harbor no ill-will against these doctors, since Cushing's is so rare (especially adrenal tumor-related in a man), that the average doctor would never see a case in their lifetime. Upon returning to the US, my back was still bothering me, so I went to my GP who referred me to an ostoeopathic surgeon. He also discovered that my blood pressure was extremely high and referred me to a cardiologist. The bone guy x-rayed my back and found four fractured vertebrae, which was quite unusual for someone so young. This, linked with my foot fracture led him to order a CT-Scan and MRI of my back. Fortunately, he spotted something odd near my left kidney and sent me off to an endocrinologist with an interest in osteoporosis. After spending only about five minutes with the endocrinologist, he told me "I know exactly what's wrong". He ordered a 24 hour urine test and confirmed his diagnosis, telling me I was a "classic" case of Cushing's Syndrome. He then referred me to a surgeon to schedule the removal of a 3cm adrenal tumor and my left adrenal gland. At the surgeon's office a group of med students was given all of my history and After Treatment symptoms, but the only one who could come up with the correct diagnosis was the one who
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already knew I had a hormonal problem. I felt like I was in an episode of Gray's Anatomy! My laparoscopic surgery lasted about five hours and I was able to go home from the hospital after a four-day stay. I was feeling pretty good (considering I'd just had surgery). On day seven I developed severe chest pain and wound up back in the hospital for another four days with pleurisy and pneumonia. This is something you want to avoid if at all possible. I stayed home from work for four weeks, feeling too fatigued to do much of anything, and often had an upset stomach. This was the hardest time for me, because I couldn't do the things I used to. Also, I've always loved to eat and enjoy good food, but during this period nothing sounded or tasted good, making eating a chore more than a pleasure. I lost almost 15 pounds in the first two weeks, but put back on about half of that. After surgery I started out on 30 mg of Hydrocortisone and weaned back to 10 within the first year. I felt tired most of the time and had a hard time psyching myself up to do things, but was confident that this would go away in time. I had the stamina to walk and exercise with light weights on a daily basis. My doctor advised me to refrain from jogging, biking, or golf for at least six months, as I was still at a high risk for further bone fractures. This was the most frustrating thing for me, because in my pre-Cushing's days I had always been very active, with outdoor hobbies and exercise. My appetite varied and my weight eventually stabilized, with my belly slimming a little and arms and legs filling back out. It took me a full two years to become Hydrocortisone free, which was frustrating because I had hoped for a faster recovery. However, I'm now back to my college weight (25 lbs below peak weight), most of the aches and pains are gone, and after intensive treatment, my bone density has recovered. My energy has returned as much as can be expected for a 49 year old and I still enjoy being outdoors, but can't jog or run due to the remaining back pain. Much to my wife's dismay, I've taken up a new hobby - skydiving. In hindsight, it should have been obvious that I had Cushing's. I showed many of the classic symptoms, but they were explained away as part of getting older. I'm amazed now by how many people had told me they thought something was wrong with me but were afraid to ask for fear of being considered nosey. Many of them are old friends that only saw me once or twice a year, so the changes in my appearance didn't seem so gradual as it did for me and my wife. Several people told me they didn't recognize me at all. It took a while to get a diagnosis, but I feel lucky to have been diagnosed after having Cushing's for around four years (estimated by looking back at old photos). I suspect I wasn't hit as hard as many because I was very active before and during my illness. My medical care in the US has been exPublished by The CSRF

cellent and my employer, family, and friends have been very understanding and supportive through the whole thing. I've learned a lot from various Cushing's websites and was connected with a wonderful email penpal who had the same procedure at about the same time. It was great being able to share progress and setbacks with someone who was in the same boat. My wife and I enjoyed living overseas, but now realize that moving back to the US to get healthy must be part of God's plan for us. We're thankful for the many problem-free years we've had together and look forward to many more now that we've put the Cushing's monster to rest. I wish the best for all of you who are still fighting for a proper diagnosis and an end to your symptoms. Chris

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Hello, my name is Carrie. About four years ago, I sent in a letter and a few pictures for the CSRF newsletter (fall 2006). I thought it was well written and truthful (it was) but something has been troubling me since then. I wasnt what I had written, it was what I hadnt written. Let me first give you a quick re-cap of my story. I was diagnosed with Cushings disease due to a pituitary adenoma in March, 2000. That was after 5/6 years of frustration, just like everyone else. I finally had an answer and was referred to USC (University of Southern California) Hospital to have my transsphenoidal resection surgery. I was lucky in this case, being that one of the finest surgeons, Dr. Martin Weiss, Professor of Neurosurgery, worked there. In October, 2000, I underwent my surgery, which was a success. During the discovery of the pituitary adenoma, they also discovered another tumor. This tumor, unrelated to the adenoma, was located in the occipital lobe of my brain. Because the pituitary tumor causing the Cushings, was more critical, it had to be removed first. After a year of recovery, I was sent to have this tumor removed. It was non-cancerous (soooo grateful), but being that it was located in the occipital lobe, an area that affects your eyesight, I lost 99% of my peripheral vision. Now that you have a little insight to my medical history, I need to discuss the OTHER things that were not addressed before. For a lot of people, me included, your emotional journey with Cushings is almost just as bad, if not worse, than your physical problems. Maybe because of being ashamed or afraid, people are reluctant to share this part. Lucky are the ones who are not affected as severely as others. When you are ill and YOU KNOW there is something wrong, yet NO ONE is listening to you, it is very frustrating. YOU can SEE changes in yourself, YOU can FEEL changes in yourself, yet it seems nobody else can. As time goes by and your trips to the MANY doctors, radiologists, neurologists, etc. cant give you any answers, its hard to stay positive. You are scared, you feel sick all the time, your hormones are erratic, you are gaining weight, it seems for no reason! With each doctor visit you feel worse. Your families dont know what to do and tension starts to build. You are unaware that your body is unleashing mass doses of steroids that are wreaking havoc on just about every organ inside of you. Have you heard of the many athletes who are on steroids and their irrational behaviors? Well, thats what we are dealing with, only WE DONT KNOW! As Cushings is taking over you (especially women) we become embarrassed by our appearance, you feel like a bald football player in a dress! I myself became fat, grew hair where I didnt want it and lost almost all of the hair on my head! Going out to any public place was unnerving, peopled stared at you. The docPublished by The CSRF

tors told you to lose weight, get more exercise. People THINK they know what is wrong with you, Stop stuffing your face, Get off the couch, but they DONT know! In my case, I was eating exactly as my doctor ordered, I went to aerobics twice a day, and it did NOTHING! My weight went up to 230lbs. All of the ciaos can take a toll on your loved ones, even your friends. There came a time when I got so ill, I began to have irrational phobias, things that to others were very strange. I was deeply afraid to be by myself, I even wanted to have someone stand at the bathroom door with it open, when I needed to use it. I also was scared out of my mind to go to sleep unless someone stayed in bed with me and they HAD to stay AWAKE. Not only are our bodies on steroids, we cant sleep and suffer from sleep depravation. So you can see what a mess we can become. The doctors already think its all in our heads, so we begin to believe them. I came very close to it. One day I decided that I could not live another day like that. I said I thought I was going crazy and didnt want to live anymore. My (then) husband and my daughter (20yrs old at the time) drove me to the hospital, only to be turned away saying that I had to have already tried to harm myself. My husband did what he always did, never the one to disrupt the peace or cause a scene, said Well there is nothing we can do, we might as well go home, but NOT my daughter, she fought tooth and nail, she argued, yelled, and even got on her knees and begged. Thank goodness they relented and I had a two week stay there. Even though they had no idea I had a disease, and thought I was Loony, the stay there probably saved my life. All the medications I was on allowed me to get much needed sleep and also kept me focused on other things. By the time I was finally diagnosed, I actually was losing my cognition. I was unable to remember my phone number, my address and where things were in my own house. I also lost track of time. I wonder today, how many people out there are suffering from an illness as with Cushings, and are stuck in mental institutions, and no one knows? Well, today I am lucky to be alive, Im thankful for each day I wake up. If you are ill, it is very important to have people around you that will stand up for you, that will go to bat for you, someone who believes in you. If you dont have that support, GET SOME, you can meet other Cushies through the CSRF, you may also get info by calling the CSRF that could be beneficial to you. Do not give up your fight. I thank my daughter for saving me. I would not be here today if not for her. Remember you CAN beat this. You are David and this info is your STONE, Goliath (Cushings) will ultimately go down defeated!! Good luck to all of you!! Reclaim your life! Carrie
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I have been resting, resting, resting for 7 months now after my recent health crisis with Cushings Disease. I had Pituitary Tumor Surgery 12/03 during which I had spinal fluid leakage that was patched up with a titanium mesh, a huge Macro Adenoma was removed, and a physical and emotional wasteland left behind. That type of surgery usually lasts about 4 hours, but mine was 9 due to difficulties. In April, 2010, I had, I guess you could say, a cortisol crisis, swinging way high then way low. Due to all the scarring from my previous surgery, the Univ. of Colorado Pituitary Clinic was not able to determine if there is tumor regrowth or not. They do now think that I had a brain stroke during my first surgery, which would explain why I cognitively struggled so much after that. This time around, the highs of this Cyclic Cushings gave me the sensation of putting my finger in a light socket. Then I would swing dangerously low to Addisons, which put me in the Emergency Room. I could not walk, barely talk, or make my own food. They were considering putting me in convalescent care. For a time, I had caregivers coming to my home to help me function, then a Physical Therapist, Occupational Therapist, and Speech Therapist. I am now happy to say that I am gaining my strength back, with the help of medication to remain stable. I have a solid healthcare team which gives me solace. Beyond this, I believe my willful resiliency helped me stay alive. However, I am realistic that Cyclic Cushings Disease is an illness I will always have, one that again took me for a dangerous ride. I started

researching my illness, and found others on YouTube who expressed their anguish too. There are wonderful stories of the successful survivors, and those of some who continue to suffer; and other courageous souls who did not make it, who we mourn. I identified deeply, reaffirming my dedication to educating the public on this rare disease and assisting my Cushings journeyers. Gratefully, I am coming back to life. I feel like I am 'embodied' now. I am amazed by my crisis experience, and my near death experience: 'seeing the light' and when asked if "I wished to live" I said YES, not knowing after I passed out if I was going to wake up afterwards. I am walking and talking well now, and driving again, something I struggled with during this last harrowing experience. My head is spinning from the roller coaster I have endured. My online video will explain more: Through my health crisis, I have developed a rich spiritual life. I feel blessed and Thank God daily, continuing to pray for my 'Cushie' Sisters and Brothers. I have resumed my Skype and phone counseling business and it feels so good to 'get back on the horse'. I am most eager to help Cushing's patients through their 'Dark Night of The Soul" (Caroline Myss) process, adapt to a new lifestyle of pacing and self-regulation, and move from the machinations of the head into the spirit of the heart. I am only a phone call away, offering a hand you can hold. Please reach out, you are not alone. Blessings, PAT

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Published by The CSRF 65 E. India Row, Suite 22B, Boston, MA 02110-3389 617-723-3674 web site: Page 14

The Cushings Support and Research Foundation is a non-profit organization incorporated in the state of Massachusetts to provide support and information to those interested in Cushings. This publication is for informational purposes only, and does not replace the need for individual consultations with a physician. CSRF does not engage in the practice of medicine, endorse any commercial products, doctors, surgeons, medications, treatment, or techniques. The opinions expressed in this newsletter are those of the individual author, and do not necessarily reflect the views of individual officers, doctors, members, or health care providers. BOARD OF DIRECTORS Louise Pace, Founding President 65 E. India Row, Suite 22B, Boston, MA 02110 617-723-3674 Elaine Wolman, Director 5446 Alta Vista, Laguna Hills, CA 92653 949-455-0555 fax: 949-455-0585 Karen Campbell, Director 12531 W. Limewood Dr., Sun City West, AZ 85375 623-518-4871 Lee Carlson, Director 925 9th St. S. St. Peters, MN 56081 Ellen Koretz Whitton, Director Seattle, WA Dr. James Findling, Endocrinologist Endocrinology Center at North Hills Medical College of Wisconsin Menomonee Falls, WI 262-253-7155 Meg Keil, Director of Pediatric Programs NICHD, NIH, Bethesda, MD John P. Gulielmetti, Treasurer

Interested in Helping Others with Cushings?

The CSRF is always in need of members willing to have their email address and information posted in the Members to Contact section of our website! If you are willing to help, simply change your profile in the Member Services section of our website or email:

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If you arent already on our mailing list, you can join through our web site at www.CSRF.netMember Services, or just return this form to: CSRF, 65 E. India Row, #22B Boston, MA 02110 Name____________________________________________ Address__________________________________________ _________________________________________________ City______________________ State ________ Zip_______ Phone:__________________________________________ Email:___________________________________________ Suggested donation for membership is $30.00 and is tax deductible. Please make checks payable to CSRF. Are you a Cushings patient? __yes __no

Did you have: ___pituitary tumor ___adrenal tumor ___other

Please Dont Forget to Keep Your Information Current!!

If you have an email address on file with the CSRF, you can make changes to your contact information or status by logging in to the Member Services section of our website. If you do not have an email on file and wish to add one, please email

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Cushings Support and Research Foundation 65 E. India Row, Suite 22B Boston, MA 02110

The Cushings Support and Research Foundation

Dr. George Chrousos University of Athens, Greece National Institute of Health Bethesda, Maryland Dr. David Cook Department of Endocrinology Oregon Health Sciences University Portland, Oregon Dr. James Findling Endocrinology Center at North Hills Medical College of Wisconsin Menomonee Falls, Wisconsin Dr. Laurence Katznelson Medical Director, Pituitary Center Stanford University, Stanford, California Dr. Anne Klibanski Chief, Neuroendocrine Unit Massachusetts General Hospital Boston, Massachusetts Dr. Andre Lacroix Professor of Medicine Director, Endocrinology Program University of Montreal, Quebec, Canada Dr. Edward Laws Neurosurgery Brigham and Womens Hospital Boston, Massachusetts Dr. Lynnette K. Nieman Clinical Director National Institute of Health Bethesda, Maryland Dr. Edward Oldfield Crutchfield Professor of Neurosurgery and Internal Medicine University of Virginia Charlottesville, VA Dr. David Schteingart Professor of Medicine University of Michigan Ann Arbor, Michigan Dr. Constantine Stratakis Director, Pediatric Endocrinology Program NICHD/NIH Bethesda, Maryland Dr. Brooke Swearingen Department of Neurosurgery Massachusetts General Hospital, Boston Dr. J. Blake Tyrrell Endocrinologist UCSF Endocrine Group Practice San Francisco, CA Dr. Mary Lee Vance Professor of Medicine, Division of Endocrinology & Metabolism, Professor of Neurosurgery, University of Virginia, Charlottesville, Virginia Dr. Martin Weiss Professor of Neurosurgery University of Southern California Los Angeles, California

2010 The Cushings Support and Research Foundation