Donna Sellers, President, John's Foundation for Cushing's Awareness, mother of a Cushing's patient.

Donna's son may have been born with an adrenal tumor. His tumor was discovered and removed about 4 years ago. Since that time, he has been diagnosed bipolar and ADHD. Because of John's ongoing medical issues, Donna home-schools him in addition to running the foundation she started and named for John. Donna helps children and families worldwide who are dealing with Cushing's.

Keywords: adrenal tumor, aggression, blood pressure, cardiologist, cortisol, Cushing's, diabetic, diagnosis, endocrinologist, malpractice, medications, moonface, MRI, occupational therapy, PCP, pediatric, puberty, scan, speech therapy, stroke, surgery, symptoms, testing, treatment

Dr. Dori is a Psychophamacologist and a Certified Gestalt Psychotherapist in private practice seeing adults, children, and families in the Philadelphia area.

She also co-leads workshops and training at the Pennsylvania Gestalt Center and is Founder and Director of the Center for a Healthy World, a volunteer-driven psychotherapy and training cooperative. Dori is a board-certified psychiatrist in private practice seeing children, adults and families.

Naturally, her other significant credential is having had Cushing's Disease herself! She has had both pituitary surgery and two gamma knife radiosurgeries. Her topic in the first guest chat was Psychiatric Issues with Cushing's Disease.

Dr. Middleman was recently interviewed on a Philadelphia-area public radio talkshow, Voices in the Family, and spoke about Cushing's Disease and how to make meaning out of illness and adversity. The show is available for listening online by going to Listen here Â

Read Dr. Dori Middleman's article How To Have Fun With A Brain Tumor.
Read Psychiatric Issues of Cushing's Patients
Read "DrDori", Dr. Dori Middleman's First Guest Chat, Psychiatric Issues with Cushing's Disease, April 14, 2004.

Keywords: Psychophamacologist, Certified Gestalt Psychotherapist, Patient, pituitary, surgery, gamma knife, radiosurgeries, treatments, medication, therapy, Cushing's, tumor, adenoma, growth hormone, energy, antidepressant, post-traumatic, relationships, emotions, steroids, sleep disturbance, depression, fatigue, anxiety

Heather S had pituitary surgery on January 18, 2006 after years of medical problems, June 5, 2008.

From Heather's bio: "I lived my life with cerebral palsy growing up.. I had problems with weight, but nothing really horrible like now. When I gained it was little bits, but with how active I was, I could never lose anything. When I turned 21 I graduated from college and was looking for employment, which was also difficult because people thought that I was in pain when I walked.

Around the age of 22 I started to see fluid retaining in my legs.. it wasnt so bad at first.. also in college I broke my bones in my feet 3 times for no real reason. The fluid in my legs started getting worse and worse and the fluid was just leaking out of my legs. I went to the emergency room and had no insurance so I was kind of unlucky there. I went to a primary care doctor and was told that I had lymphedema and was given fluid pills. They didn't really work..."

Read Heather's bio at http://www.cushings-help.com/heather_s.htm

Keywords: pituitary tumor, surgery, adenoma, cortisol, cushing's, diagnosis, endocrinologist, medications, message boards, MRI, PCP, pituitary, steroids, symptoms, testing, treatment

Steve returned to talk about support networks and agencies. His topic was building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc). Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.

Read Steve's bio.
Read Steve's newspaper article.
Listen to Steve's Archived Interview from April 10, 2008
Listen to Steve's Archived Interview from May 29, 2008

Keywords: ACTH, adrenal, adrenal sampling, agencies, cancer, Cushing's, daughter, diurnal rhythm, Dr. Ian McCutcheon, Dr. Ted Friedman, Dr. William Ludlam, endocrine, endocrinologist, HyperBeta Adrenergic Syndrome, hyperplasia, IPSS, job coaches, joint pain, MD Anderson, metastatic, MRI, pheo, pituitary, police, PT/OT, rehab, support networks, surgery, therapy, tumor, wean

Leslie had pituitary tumors removed twice at the University Of Michigan.

After her second surgery she gave birth to her second baby.

She has had another recurrence and has had Gamma Knife Radiation April 3, 2008. She is not yet sure if the Gamma Knife worked yet.

Read Leslie's bio at http://www.cushings-help.com/leslie3.htm

Keywords: ACTH, baby, breathe, cortisol, c-sections, dermatologist, diagnosed, Dr Chandler, Dr William Malarky, Dr. David E. Schteingart, elbows, Endocrinologist, Gamma Knife Radiation, gland, halo, helmet, ICU, injections, ketoconozole, knuckles, moon face, MRI, neck, night sweat, nodule, Ohio State, Pituitary, pneumonia, pregnancy, pregnant, scar, stretch marks, tired, transphenoidal, tumour, University, University Of Michigan, urine, weak, weight

Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.

Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.

Jordan, Jackie's oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy. She participated in this chat as well.

Read Jackie's bio at http://www.cushings-help.com/jackie2.htm

Keywords: adrenal, atrophy, bilateral adrenalectomy, BLA, blood, bruising, CT scan, cyclical, Discovery Health TV, Diseases Doctors Miss, Dr. Constantin Stratakis, endocrinologist, epidural, gene, gene mutation, hereditary, hyperplasia, iMAD, laparoscopic, Liddle Test, Munchausen's, Mystery Diagnosis, NIH, Parkinson's, PDE11A, Stanford, stress, surgery, tired tumor, ufc, weight

Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by.

Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.

Read Ferol's bio at http://www.cushings-help.com/ferolv.htm

Keywords: 24-hour ufc, ACTH, adenoma, adrenal insufficiency, artery, blood tests, cholesterol, chronic, clotting, cortef, cortisol, Cushing's, cyclic, diabetes, diagnosis, Discovery Health, dynamic MRI, emdometrial ablation, endocrinologist, ENT, free T-3, Free T-4, hair loss, hearing loss, hirsuitism, hydrocortisone, hypertension, hysterectomy, Loestrin24, Metformin, nausea, nerve, neurosurgeon, night sweats, NIH, OB-GYN, physical, pituitary, plaster cast, prolactin, scar tissue, scoliosis, sinus, skeletal soft tissue degeneration, steroids, surgery, symptoms, testing, tired, thyroid, treatment, urine, uturus, vaginal atrophy, wean, weight

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.

Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!

From Monica's bio

Keywords: 24-hour ufc, Addison's, adenoma, adrenal crisis, anemia, antibiotics, B12, cholesterol, cortisol, cushing's, diagnosis, Family and Medical Leave Act, fatigue, fish oil, FMLA, gamma globulin, Gatlin Brothers, genetic, growth hormone, immune system, infection, insurance, IPSS, medications, pituitary, positive attitude, red face, sinus, steroids, strength, surgery, swelling, symptoms, testing, tired, treatment, triglicerides, Vitamin D, wheelchair, wean, weight

Read Steve's bio.
Read Steve's newspaper article.

Jenn (StaceyJenn) has steroid-induced (Iatrogenic) Cushing's. She has taken steroids for secondary adrenal insufficiency. She has also been diagnosed with hypothyroidism, candidiasis, intestinal permeability and 22 latent food allergies.

Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing she and was transferred to his associate. The associate switched Jenn to medrol. Since then, Jenn has tried to wean off the steroids and has had further difficulties..

Read Jenn's bio
Listen to Jenn's Archived Interview from April 3, 2008

Keywords: 4-day rotation diet, accupuncture, adrenal, allergies, anti-fungal, asthma, blood pressure, calcium, candidiasis, chronic fatigue, corticosteroids, depression, dexamethosone, holistic, hydrocortisone, hypothyroidism, Iatrogenic, immune system, inhalers, intestinal permeability, joints, leaky gut, LEEP, Lyme Disease, medrol, mood swings, MSM, nasacort AQ, ovarian cyst, pain, predinsone, probiotic, pulmonary, SINGULAIR, specialist, steroids, stress, swelling, thin skin, thyroid, weight

Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it.

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.

Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!

Monica is a professional violinist.

From Monica's bio

Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07

Her blog is available at http://vinesqueen.blogspot.com/

Keywords: 24-hour ufc, ACTH, adenoma, adrenal crisis, bilateral adrenalectomy, BLA, bruising, Camp Cushie, cortisol, cushing's, cyclical, Cyclical, diabetes, diagnosis, Dr. William Ludlam, encapsulated, fat pads, forceps, headache, hump, infection, Ketoconazole, lap-band, medications, message boards, MRI, nausea, Nelson's, NIH, OHSU, PCP, pituitary, radiologist, sinus, Solu-Medrol, steroids, surgery, symptoms, testing, tired, treatment, weight, wean, wheelchair

Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.

A doctor didn't advise Vermont's Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.

Read Karen's newspaper article Patients Fighting Cushings Disease.

Read Karen's bio.
Listen to Karen's Archived Interview from February 21, 2008

Keywords: Addison's, adrenal crisis, anemic, Auto immune Alopecia, bioidentical hormones, blood pressure, bone, bronchitis, cortisol, cycling Cushing's, diurnal variation, Dr. William Ludlam, endocrinologist, exercise, fatigue, free T3 and T3. pituitary, genetica, GH deficiency, growth hormone, gynecologist, hair loss, Hashimoto's, hormone, HRT, IGF-1, lab, medication, menopause, muscle, naturapath, PCP, professor, saliva, stress fracture, Thyroid disease, weight, Weight Watchers, wig

Cushing's Diagnosis and Symptoms, part 2.

Robin (Staticnrg) Listen as Robin Smith (staticnrg) and Mary O'Connor (MaryO) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment.

Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Members of the message boards who called in to share were Leslie and Becky

Keywords: adenoma, adrenal, adrenalectomy, cushing's, cyclical, depression, diagnosis, DNA, Dr. Salvatori, dynamic MRI, ectopic, fat, growth hormone, hysterectomy, medications, memory, message boards, pituitary, salivary cortisol, serum, steroids, straie, surgery, symptoms, testing, testosterone, tired, treatment, weight

Mary O'Connor, Cushings-Help.com founder interview with Robin Smith (staticnrg).

Robin Smith (staticnrg) Listen as Mary O'Connor (MaryO) hosted part two the interview with Robin Smith (staticnrg).

Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com.

Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors for all sorts of things trying to get help. She kept getting sicker and sicker, and it got harder and harder to do anything.

Eventually, after having a bad experience with UVA, she went to see Dr. F. We went through some rounds of testing, had our ups and downs, but he stuck with me, and she got some sky high test results. Robin had to learn when to test because she was cyclical. Oddly enough, Dr. Jho, when she had surgery, insisted she was "classical" Cushing's. Robin didn't care what you call it, she just wanted to get well.

Topics discussed in the Archived Interview:

Q: How are you feeling tonight? I know you just had a GH test. Do you have the results of that yet?

Q: I know last time you told us about a bad experience with that bariatric surgeon. How were you treated by other doctors?

Q: What can you tell us about the early testing where no one put two and two together?

Q: How did you contact surgeons and what led you to pick one?

Q: Many people are oddly excited and happy when they find out that they have Cushing's because it means that there may be an end to their suffering finally. For you, instead of being happy about finally having validation, a diagnosis, and treatment (surgery) you weren't happy. Can you tell us a little about that? How did you work through that - or have you yet?

Q: How Robin shares her journey so others who are walking where she walked will recognize Cushing's and find help.

Keywords: 24-hour ufc, adenoma, adrenal crisis, bariatric surgeon, calcium, collapsing veins, cortisol, CPAP, cushing's, cyclical, diagnosis, IPSS, Dr. Laws, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, ENT, fat pads, gastroenterologist, hump, insulin resistence, MD Anderson, medications, message boards, MRI, PCP, pituitary, potassium, salivary, serum cortisol, sleep apnea, stress fractures, surgery, symptoms, testing, tired, treatment, weight

Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com.

Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors for all sorts of things trying to get help. She kept getting sicker and sicker, and it got harder and harder to do anything.

Eventually, after having a bad experience with UVA, she went to see Dr. F. We went through some rounds of testing, had our ups and downs, but he stuck with me, and she got some sky high test results. Robin had to learn when to test because she was cyclical. Oddly enough, Dr. Jho, when she had surgery, insisted she was "classical" Cushing's. Robin didn't care what you call it, she just wanted to get well.

Keywords: 24-hour ufc, acne, adenoma, adrenal crisis, bariatric surgeon, boils, broken bones, bruises, calcium, collapsing veins, cushing's, cyclical, diabetes, diagnosis, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, fat pads, hump, hyperthyroid, kidney stones, lactation, medications, message boards, MRI, ovarian cyst, PCOS, PCP, pituitary, red face, straie, stress fractures, surgery, symptoms, testing, tired, treatment, weight

Jayne Kerns is a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.

Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper.

Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.

One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, the credit is given to Jayne.

Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.