I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it's hard to get a diagnosis now - imagine how hard it was over 30 years ago - before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support - no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don't understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn't even believe you.

Finally, a doctor believes you...but he's the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH - close by and free, Montreal - they speak French - and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn't walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don't have to keep sticking me). I got to go home for a weekend and then went back for the surgery - the Transsphenoidal Resection. I fully expected to die during surgery (and didn't care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn't know her) did die at NIH of a Cushing's-related problem. I'm so glad I didn't find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself - thank goodness!

I had to use a foam product called "Toothies" to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn't). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure - the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my "outside" endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

 

Interview with Mary O'Connor (MaryO), founder of Cushings-Help.com and 25-year pituitary Cushing's Survivor. Robin (staticnrg) hosts.

Listen to internet radio with CushingsHelp on Blog Talk Radio

Please note: Some of these links are broken while I'm moving to this new site.  I'll get them fixed as soon as I can!

These "Male Only" bios were suggested by a member of the message boards. This list currently includes only bios from 2007-2010. Older pre-2007 adrenal and ectopic bios have been added.  Names A through D of the older pituitary bios are added now.

Added 12/9/2016:

Matthew is from Grain Valley, Missouri.  He had a failed pituitary surgery August 9, 2016 after being fired by a couple endocrinologists.

Adrenal

  • Andrew E (hurryupandwait) is from Long Beach, California. He just discovered he has Madelungs disease and is trying to find any resources.
  • Bill (bill) is from El Centro, California. A CT scan found an adrenal mass but he doesn't have any symptoms.
  • Bruce has Conn's Syndrome which is being treated successfully with medication
  • Bruce L is from Windsor Locks, Connecticut. He hopes that robotic surgery will remove his adrenal tumor leaving most of his adrenal gland so there will be no steroid treatment required.
  • Charles had his adrenal glands removed. Ginger tells her dad's bio. His name was Charles Hamilton Hawn the fourth and her oldest brother says he is in the medical books as one the first with this illness from 1962-1967.
  • Chris (slpatient) is from Houston, Texas. He had laparascopic adrenal surgery.
  • Dave (Dave H) is currently undergoing testing at Stanford endocrinology for possible Cushing's/Pheo.
  • David T (Wombat) is from Manchester, United Kingdom. He has been diagnosed with probable cyclical adrenal Cushing's and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy.
  • Donald is from Hillsborough, New Jersey.   He was misdiagnosed in 1957 and 1960 when it was said that his problem was due to conversion reaction. He had a left adrenalectomy in 1994.
  • Duncan was diagnosed July 9, 2003 with tumor on his adrenal gland.
  • Frank (franski) was diagnosed with Cushing's 4 years ago but when the Insurance company figured out how much all the testing and treatment was going to cost all of a sudden his doctor at the time said "don't worry all is fine it's not Cushing's after all. you have diabetes and very high blood pressure."
  • Harley (HBW) has Addison's disease and a pituitary adenoma.
  • Harry has had bilateral adrenal tumors for over 17 years.
  • Jason is from Atlanta, Georgia. In July of 2014, he started massive pains in his stomach with rectal bleeding and major flank pain. He went to the doctor and he ordered a CT of his abdomen. The CT showed bilateral Adrenal masses (left was 2.2cm and right was 3cm).
  • Jeff has right adrenal cancer which invaded the inferior vena cava and the liver. He is blind.
  • Jill's father had Addison's for over 30 years before he died following triple bypass surgery.
  • Joe (Joe) is from Fredonia, New York. he had adrenal gland surgery June 5, 2005. He just recently weaned off cortisone and is currently on disability retirement.
  • John (JCinVT) is from Graniteville, Vermont. He was diagnosed with Primary Aldosteronism (Conn’s) and Subclinical Cushing’s Syndrome (SCS) by NIH (Protocol 00-CH-0160) 2 years ago
  • Jordy Jordy is a British man who has been dealing with Cushing’s and many surgeries.
  • Korey (korkeeper) was diagnosed with Cushing's Syndrome in his right adrenal gland. His surgery was in May of 2007
  • Leann is from Bulger, Pennsylvania. Her son was recently diagnosed with Congenital Adrenal Hyperplasia (CAH). She suspects possible adrenal problems with her oldest daughter (age 19) and herself.
  • Lori (larrysdaughter) is from Coeburn, Virginia. Her father has many diagnoses including Hypertensive Urgency, electrolyte imbalance, TIAs and a small CVA, Diastolic Dysfunction, Bradycardia, with trace Tricuspid regurgitation, mild Mitral regurgitation, a small patent foramen ovale in the Interatrial septum, Glaucoma, a hydrocoele, and periodontal disease. He has an 18 x 13 mm left adrenal lesion and high cortisol but is not yet diagnosed with Cushing's.
  • Mark (Mark) is from Louisville, Kentucky. He has Addison's Disease and would like to meet others who have this disease.
  • Mary's son has adrenal cancer.
  • Michael B was diagnosed with Cushing's in late 1979 and had a bilateral adrenalectomy in 1980. He also had pituitary surgery and Nelson's Syndrome.
  • Mohammed is from Tasmania,  He is 7 years old and is recuperating after city doctors removed 7-cm tumour from his adrenal gland, which was responsible for his 12-kg weight gain, growth of facial hair.
  • Quinton (Quinton) has had three adrenal surgeries
  • Peggy's husband had a pituitary tumor removed in May 2012 after a diagnosis of Cushings.  He still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.
  • Raymond was first diagnosed with Cushing's in 1983 and is now Addisonian
  • Robert is from Maine. He was recently diagnosed with adrenal Cushing's and has had chronic renal issues for over 20 years.
  • Robin's husband has been diagnosed with hyperaldosteronism.  He is on aldosterone blocker but has side affects.
  • Ross is from Temple City, California. He was diagnosed with a adrenal Cushing's in December 2010 and has had laparascopic surgery.
  • Sean is from Pennsylvania. His diagnosis was Bialateral macronodular adrenal hyperplasia with Cushing's Syndrome.
  • Sonny is from Melbourne, Florida. He had adrenal surgery over 4 years ago and is still struggling. He will go to the Cleveland Clinic in May 2011.
  • Steven (StevenO) is from New Lebanon, Ohio. He had a tumor on his left adrenal gland and HyperBeta Adrenergic Syndrome. He was the subject of a Live Interview in the Cushings Help Voice Chat / Podcast series April 10, 2008

    Steven's story in the media

Ectopic

  • Brian was diagnosed with Cushing's Disease in July, 2002 after suffering from episodic symptoms for about 2 years
  • Damon had Cushing's and found a 8x4x5 cm mass on his left lung
  • Daniel (Danny Boy) is from Stuart, Florida. He has an even more rare form of Cushing's with the tumor in his lung.
  • Dick had two pituitary surgeries but was told that he still had Cushing's and that there is still a tumor somewhere in his body that cannot be located.
  • Dwight (Rocky) is from Rocky Mountain House, Alberta, Canada. He had a BLA in May of 2008 because of ectopic Cushing's disease. His recovery was good with most symptoms decreasing or continuing to improve but he still has no energy, extreme fatigue and depression.
  • Keith was diagnosed with Cushing's disease in 2005. At first it was thought to be pituitary but it turned out the tumor was in his lung
  • Sean S had a thymus gland that produced ACTH and caused his Cushing's
  • Travis is from Morgan City, Louisiana. He had ectopic Cushing's caused by a carcinoind tumor. He also had a pituitary tumor removed.

Pituitary

  • A Subtle Case of Cushing's, video presentation of diagnosing a male with Cushing's. Synopsis: 36 year old male who presented with weight gain, proximal muscle weakness, and excessive sweating. Among multiple 24-hour urine free cortisol and midnight salivary tests, a minority were minimally elevated. The diagnosis of Cushing's disease was questioned over an eight month evaluation period. The challenges of diagnosing Cushing's disease are discussed.
  • Adam is 13 year old boy who was diagnosed with Cushing's Disease
  • Alex Alex is from New Jersey and had a surgery to remove a pituitary tumor in July 2011.
  • Allen had pituitary surgery with Dr. Johnny Delashaw in 2003
  • Amber's son Hunter is from Walker, Iowa.  Hunter has recently been diagnosed with Cushing's.  His doctors tested him because he hasn't grown in nearly 3 years.  His tumor is putting pressure on his optic nerve although his vision has not yet been affected.  Amber updated his bio after his pituitary surgery.
  • Anthony G is from Avon Lake, Ohio. He was diagnosed with Cushing's on October 8th, 2012 and had pituitary surgery December 4, 2012.
  • Archie was diagnosed with Cushing's in 1991 after being mis-diagnosed for about 8 years.  He had a failed surgery in 1992
  • Art wrote a PDF book about his experiences with Cushing's
  • Az is from Malaysia. He is not diagnosed with Cushing's but has many symptoms. He has seen a GP, a Nephrologist and an endo. All tests are inclusive so far except for elevated prolactin.
  • Bill had pituitary surgery in January of 1996 at Harborview in Seattle
  • Brandon (jediknight36) is from Lewisville, Texas. He was interviewed in the Cushings Help Voice Chat / Podcast series. Listen to Brandon's interview on iTunes or on the podcast page. Brandon has also uploaded videos which are included in his bio.
  • Carl had Cushing's for 8 years before diagnosis. He has had surgery.
  • Cameron had pituitary surgery May 9, 2003
  • Caspar is a 26 year old male former Cushing's patient
  • Chris is from Virginia Beach, Virginia.  He was diagnosed with Cushings while in the Navy, in pursuit of Navy SEAL and had pituitary surgery.
  • Daniel M had pituitary surgery October 23, 2002
  • Darren is from New York.  He is 42 year old male who was just diagnosed with pituitary Cushing's.
  • Darren S had successful surgery to remove a pituitary adenoma in January 2003
  • Darryl had pituitary surgery in 1992
  • David had a pituitary surgery on March 18th that did not bring him relief. This Tuesday, August 2, he will have a second surgery at a different facility with a different surgeon.  He is 16.
  • David had pituitary surgery in 2004
  • David H had pituitary surgery May 15, 2002 at NIH with Dr. Ed Oldfield
  • David W was diagnosed with Acromegaly June, 2003
  • Dennis O (denniso) is from Australia. His doctors have decided that they could not operate due to his poor health and the fact that they could not find the pituitary tumour. As a temporary measure he is taking ketoconozole to control his cortisol levels.
  • Dick had two pituitary surgeries but was told that he still had Cushing's and that there is still a tumor somewhere in his body that cannot be located.
  • Donelle T is from Staten Island, NY. He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired... His bio includes a video.
  • farmbrewer is from Janesville, California. 15 years ago he was told that he had an adenoma on his pituitary gland. He thinks that explains everything he have been dealing with for the past 20 years.
  • Jarryd (Medboy) is from New Zealand.  He is a male student with a pituitary tumor. He had accelerated weight gain since late 2011, despite frequent exercise and heavy dieting.
  • Jef's son is 14. His pituitary adenoma was removed at Childrens Hospital of Boston. He had none of the classic symptoms of Cushing's except a lack of growth development.
  • Jeff (akflier) is from Palmer, Alaska. He was diagnosed with pituitary Cushing's in July 2008 and had surgery in August 2008.
  • Jeff (jeff m) is from Abernant, Alabama. He was diagnosed with a pituitary tumor in Oct of 2005. His endo recently diagnosed him with diabetes, hypogonadism, and now suspects that he may have Cushing's.
  • Jon is from Boise, Idaho. His first pituitary surgery was with an inexperienced surgeon. He took Ketokonozole until his second surgery at UC San Francisco June 2nd, 2009.
  • Jordy Jordy is a British man who has been dealing with Cushing’s and many surgeries.
  • Joseph B is from Newark, Delaware. He was diagnosed with Cushing's in March 2013. Surgery was done in November 2013 to remove a pituitary tumor. Recovery has been very slow.
  • Joseph (joeysauce) is from Deer Park, New York. He diagnosed himself with Cushing's and has had two pituitary surgeries.
  • justbcuz (LarryN) is from Nevada. He has had multiple medical problems since 1983. In April 2007 he underwent brain surgery to remove a lesion from the left occipital lobe which was found to be benign. He is now checking into his many symptoms which could be Cushing's.
  • Kenny (ken2501) is from St. Louis, Missouri. He was diagnosed with Cushing's at the end of his freshman year of high school. He has had two pituitary surgeries and Gamma Knife radiation.
  • Kyle is from Williston, North Dakota.  He is in the middle of the diagnosis right with Dr. Theodore Friedman as of 7/15/2011.  His pituitary tumor has been identified at 3 mm, high cortisol.
  • Laurie P (LollyP) is from Martinez, California. Her son was diagnosed with pituitary Cushing's in 2002, had surgery in May of that same year, and then in July, had additional surgery for hypoparathyroidism.
  • LeAnna's 7 year old son has Cushing's.  He has had unsuccessful pituitary surgery and his next options are removal of the pituitary gland, radiation, or removal of the adrenal glands.Martin (Martin Heath) is from Seaside, Oregon. He has had migraines since he was about six years old. He has had pituitary surgery but the symptoms returned post-op.
  • Matthew is from Grain Valley, Missouri.  He had a failed pituitary surgery August 9, 2016 after being fired by a couple endocrinologists.
  • Mattie is from Cambridge, Ohio. Her husband has Cushing's. He was diagnosed June 2007, after collapsing and suffering a tramatic brain injury. He now goes to the Cleveland Clinic but they are unable to find his tumor after repeated petrossal sinus samplings.
  • Michael B was diagnosed with Cushing's in late 1979 and had a bilateral adrenalectomy in 1980. He also had pituitary surgery and Nelson's Syndrome.
  • Neale O (NealeO) is from Baltimore, MD. He diagnosed with Cushing's Disease in September of 2015. Dr. Salvatori at John's Hopkins Hospital has started him on Ketoconozale before resorting to a pituitary surgery.
  • Nick (Nick R.) is from Danvers, Massachusetts. He had pituitary surgery with Dr. Brooke Swearingen, a neurosurgeon at Massachusetts General Hospital in April, 2007.
  • Patrick is from New York, New York.  He is 20 months into recovering from a transphenoidal adenectomy to treat his Cushing’s disease
  • Patti's son is from Beachwood, New Jersey. Her 9 year old son was recently diagnosed with Cushing's and is still testing.
  • Peggy's husband had a pituitary tumor removed in May 2012 after a diagnosis of Cushings.  He still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.
  • Raymond (rkwan77) is from Rego Park, New York. He is recovering from pituitary surgery in 2005 and is still dependent on meds. He has osteopenia.
  • Robert (birdflu) was diagnosed with Cushing's in 2006 and had a pituitary tumor removed in 2007 (Swedish Hospital in Seattle).
  • Robert (Robert) is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
  • Robert (robert dean) is from Memphis, Tennessee.  After having symptoms since 1993, a tumor was found on his pituitary gland in May of 2003. In January of 2006. 2 pituitary tumors were removed but he was not cured.
  • Robin (kegansmom) is from Baltimore, Maryland. Her 19 year old son was diagnosed with a mass on his brain on 12/12/08. He had many issues after surgery. He is taking Kepra.
  • Steve is from Myrtle Beach, South Carolina. He had transphenoidal surgery on Feb. 7, 2004 at UVa with Dr. Laws. Steve updated his bio in July, 2009 after being in remission for almost 5 years. His doctor is recommending Gamma Knife.
  • Suzypar (Mike) is from Langhorne, Pennsylvania. Her husband Mike developed osteoporosis, diabetes, high blood pressure and other problems seemingly over night. He had transphenoidal pituitary surgery June 23, 2008.
  • Theresa is from Huntington, West Virginia. Her 7 year old son has been diagnosed with Cushing Syndrome. he will have surgery on June 1, 2008 to remove his pituitary tumor.
  • Tim B (tbovs) is from Sault Ste Marie, Canada. He has been struggling with rapid weight gain and fatigue and headaches for the past 8 years or so. A pituitary MRI recently showed a macroadenoma and he will continue testing.
  • Travis is from Morgan City, Louisiana. He had ectopic Cushing's caused by a carcinoind tumor. He also had a pituitary tumor removed.

Steroid-Induced Cushing's

  • Harley (HBW) is from Sturgis, South Dakota. He has Addison's Disease and a pituitary tumor. He has steroid induced Cushing's.

Undiagnosed

  • Al (flyguy) is from Miami, Florida. He is not yet diagnosed but is having a lot of testing.
  • Barry is from San Francisco, California. He is not diagnosed with Cushing's but was just diagnosed with (ICSR) Idiopathic Central Serous Retinopathy.
  • Bob (RDP) is from Portsmouth, Ohio. His diagnosis of "suspected" Cushing's was by a dermatologist.
  • Bobby (bobbyb) is from New Orleans, Louisiana. He is not yet diagnosed with Cushing's but has many symptoms. When he was 15 he was diagnosed with Chron's Disease.
  • Cathy (cathymikex2) is from Cazenovia, New York. Doctors have told her that her seventeen year old son may have Cushing's. They are waiting for a referral to an endo.
  • Clarke (mutley) is from Norwich, England. He has had 4 24 hour urine cortisol tests (all indicative of Cushing's) and dexamethasone suppression test (inconclusive). He has been referred for an inpatient stay the hospital for further tests and an official diagnosis.
  • Crystal's son is 3 1/2 and had a sudden 10 pound weight gain between February-May 2011.  He has been tested for Prader-Willi.  Crystal thinks he might have Cushing's.
  • Dom (05819) is from Ernest, Pennsylvania. He is not yet diagnosed but has many symptoms.
  • Don S (Don S) is from Pittsburgh, Pennsylvania. He is not yet diagnosed but knows about cortisol and its effect on the body because his mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.
  • Drew (DrewP) is from Omaha, Nebraska. He is a 24 year old male who has been feeling out of whack for 4 years now. His problems started with the indication of low thyroid, then noticed low testosterone.
  • Ellen (esg31) is from Wilmington, Delaware. Her son has been struggling for almost a year with unexplained physical and psychological symptoms. He has been tested for thyroid issues, Cushing's and pheochromocytoma.
  • Eric (Eric O) is from Artesia, California. He is not yet diagnosed with Cushing's but has had CSR for almost 13 years.
  • Harry (harry1) is from Nicktown, Pennsylvania. He is not yet diagnosed with Cushing's but he has been diagnosed with diabetes and is doing Cushing's testing.
  • Heather P is from Colorado. Her husband is not yet diagnosed with Cushing's but he has been having a lot of symptoms since late 2015.
  • James (JamesC) is from Roanoke, Virginia. He is not yet diagnosed with Cushing's but has many symptoms.
  • Jeff: Denise (Jeff's Mom) is from Sayreville, New Jersey. Her son is almost 16 years old and so sick he hardly gets out of bed anymore. Doctors do not not give her any other ideas of what is wrong with him only that he needs to lose weight and exercise more.
  • Jennifer (mrsames77) is from Humble, Texas. She thinks her 11 year old son might have Cushing's and she is taking him to be tested.
  • Joe C and his wife Selva (joecasas) are from Denton, Texas. He is not yet diagnosed with Cushing's but he has many symptoms and has been diagnosed with diabetes.
  • Juletta is from North Carolina. Her 20-year-old son might have Cushing's. He is testing.
  • Justamom is from Pittsburgh, Pennsylvania. Her 12 year-old son is being tested for Cushing's. He has many symptoms, but hates needles so progress has been slow.
  • Kyle (Kyle) is from Williston, North Dakota. Kyle is not yet diagnosed but has many symptoms.
  • Linda P (Jusmom1) is from Harleysville, Pennsylvania. Her son has elevated ACTH, Cortisol and Prolactin but is dexamethasone suppression was normal and he was told he didn't have Cushing's. Linda updated her son's bio after finding a doctor to take him seriously. They'll see Dr. Serge Jabbour at Jefferson Hospital in Philadelphia January 7, 2008.
  • Matthaios is from Portland, Oregon.  He is currently attempting to get diagnosed by Dr. Theodore Friedman.
  • Michelle (Michelle)'s son has been steadily gaining weight, has a large round face with red checks and large torso. They have been to 3 endocrinologists so far and have not been given a diagnosis of Cushing's. Michelle's sister has cyclical Cushing's.
  • Mike (mtlmike) is from Montreal, Canada. He is not yet diagnosed with Cushing's but has many symptoms. He is scared and anxious and looking for a solution.
  • Nick H (Nickh) is from Wentzville, Missouri, He has had symptoms since 2003 and is testing for Cushing's.
  • Oanh (one) is from Portland, Oregon. he is not yet diagnosed with Cushing's but has many symptoms and has had a lot of tests over the years.
  • Ryan is from Scotland.  He a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels
  • Patrick (Patrick) is from Montreal, Canada. He is not yet diagnosed but has many symptoms. He had his first endo appointment on December 3, 2010.
  • Randy (burrman) is from Portland, Maine. He is not yet diagnosed with Cushing's. He saw a news item on Fox News and he thinks his symptoms match Cushing's.
  • Tracey (trayseejaw) is from Franklin, New Jersey. Her 10 year old son may have Cushing's.
  • Trent (Trent) is from Gardendale, Alabama. He has not yet been diagnosed with Cushing's but he has many symptoms.
  • William S (Ryan1976) is from Atlanta, Georgia. He has been told he might have Addison's but William believes he has Cushing's.

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Cushie warriors: men, women & children who battle Cushing’s numerous times in hopes of winning the war

 

MelissaTX posted this on the message boards in honor of Cushing's Awareness Day, April 8:

Many of you only know one person with Cushing’s. It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment. You have probably never known someone with Cushing’s before, right? You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures.

You see, for us, we know MANY people with Cushing’s through cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated. When it happens to us, we are often rendered speechless. When we see our fellow Cushies meet the same poor medical treatment, we become incensed. Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.

For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.

Every patient wants to be understood, supported, and cared for. We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.


Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’

(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

Cambridge Who’s Who® member Donna Sellers is the founder of John’s Foundation for Cushing’s Awareness (JFCA, Inc.), a nonprofit foundation that raises awareness about Cushing’s syndrome in children. Ms. Sellers became involved in promoting Cushing’s awareness after her son, John, experienced a series of misdiagnoses before pediatricians determined that he had Cushing’s syndrome — a condition that occurs rarely in children. Through her work with JFCA, Inc., Donna Sellers empowers parents to push pediatricians to accurately diagnose children with Cushing’s syndrome by raising awareness of the disease.

Cushing’s syndrome occurs when the body accumulates too much cortisol, which is a hormone produced in the adrenal glands that regulates blood pressure and metabolism. When the body produces too much cortisol, significant changes occur in the body’s tissues and organs. Children diagnosed with the disease experience rapid weight gain accompanied by a decrease in growth rate (linear height). Other problems that may occur include: facial roundness; excess hair growth on the cheeks, arms and legs; development of pubic hair at a younger age than usual; irregular or absent menstrual periods; easy bruising; and, high blood pressure1. An estimated 10 to 15 of every one million people are affected each year, and only about 10 percent of new cases occur in children2.

Six years ago, Ms. Sellers took her son, who was five years old at the time, to his pediatrician because she noticed he weighed substantially more than other children his age. Within weeks after the doctor’s visit, John experienced a rapid weight gain and developed facial and pubic hair that normally develops in children between 10 to 12 years old. After notifying John’s pediatrician of the drastic changes, he underwent additional testing. Through a bone age scan, doctors found that John had the bones of an 8-year-old. They also found a tumor on his left adrenal gland that needed to be surgically removed. After the surgery, John was diagnosed with bipolar disorder, ADHD, OCD, borderline Asperger’s syndrome, and attachment disorder, among others, before his doctors were able to determine he had Cushing’s syndrome.

After enduring the experience of determining what was wrong with John physically, Donna Sellers decided to spread a message to physicians to encourage them to better recognize the symptoms of Cushing’s syndrome in children. She advocates for community education about Cushing’s, and provides support to families who are having their children tested for the condition. “I don’t want another family going through this alone,” Ms. Sellers noted. She continues to write articles about Cushing’s in local newspapers, and has reached out to government officials to sign proclamations for appropriate medical diagnoses in children.

Ms. Sellers home schools her son through the Georgia Cyber Academy, an online public school that offers Georgia students in grades K-12 an exceptional learning experience. The virtual school provides curriculum packages that include high-quality lessons with mastery-based assessments to ensure students achieve success at each and every grade level from elementary through high school. Georgia Cyber Academy accommodates gifted and special needs students who require a more rigorous or customized academic program, and students with health concerns that prevent them from learning in a traditional classroom setting.

To learn more about John’s Foundation for Cushing’s Awareness, or to receive information about Cushing’s syndrome, visit http://www.jfcainc.com.

1-2Keil, Meg (Winter, 2004) “Cushing’s Syndrome in Children” Retrieved November 5, 2010 from Cushing’s Support and Research Foundation website.

From http://cambridgewhoswhocares.wordpress.com/johns-foundation-for-cushings-awareness/

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