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Amber D, Pituitary Bio

December 11, 2025

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Adapted from https://www.stuff.co.nz/business/money/130677664/woman-loses-home-after-insurer-turns-down-brain-tumour-claim

 

 

When Amber Denney​ bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.

But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.

Denney was diagnosed with a pituitary tumour in 2020​, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.

But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000​ claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.

As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.

At a time Denney, now aged 26​ and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.

BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.

Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.

But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.

Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.

“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.

“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.

There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.

While the BNZ Life policy did cover pituitary tumours, there were two caveats.

First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.

Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.

Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.

In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.

“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.

Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.

But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.

It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.

One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020​, operated on in September 2020​ during the level 4 lockdown, proof of permanency had still not been established.

Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.

“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.

“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.

Denney says one horrified BNZ worker told her not to let the bank win.

“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.

BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.

BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.

Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.

It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.

Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.

It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.

Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.

Denney said her surgery saved her life, and her weight has dropped by 35kg​.

Doctors told her in 2020 that without the surgery she would have two years to live.

“I’ve passed that two years now, so every day’s given to me now,” she says.

At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.

She has landed a job at a supportive employer in Hamilton.

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Actress Charly Clive, Pituitary Adenoma

December 4, 2025

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Best friends Charly Clive and Ellen Robertson thought carefully about what to call the tumour that was growing in Charly’s brain.

The doctors had their own name for the golf-ball-sized growth sitting right behind Charly’s left eye — a pituitary adenoma — but the friends decided they needed something less scary. They flirted with calling it Terry Wogan (‘as in Pitui-Terry Wogan,’ says Ellen), but that didn’t seem quite right.

So Britney Spears fan Charly, then 23, suggested Britney. Bingo! Not only was she ‘iconic and fabulous’, but Britney was also one of life’s survivors. From then on, they were a threesome — Charly, Ellen and Britney the brain tumour — although Ellen is at pains to point out that this Britney was never a friend.

What a thing to have to deal with, so young. The pair, who met at school in rural Oxfordshire, are now actresses. Charly’s biggest role to date has been in the critically acclaimed 2019 Channel 4 series Pure, while Ellen starred in the Agatha Christie mini-series The Pale Horse.

But this week they appeared together in Britney, a BBC comedy based on the story of Charly’s brain tumour. The TV pilot (and yes, they are hoping for a full series) is an expansion of a sell-out stage show they performed at the Edinburgh Fringe in 2016.

The production is admittedly surreal. Viewers are led inside Charly’s brain and the show includes a scene where Charly dons an inflatable sumo-wrestler suit on the day of her diagnosis. Poetic licence? No, it really happened.

‘My dad’s mate had given him a sumo suit as a silly Christmas present and so, on Doomsday, we took photos of me in it.’

The tone was set for how these friends would deal with the biggest challenge of their lives: they would laugh through it, somehow.

As the women, now 28, point out, what was the alternative?

Charly says: ‘It was that thing of laughing at the monster so you are not scared of it. If you cry when do you stop? It was easier to make light of it.’

Their show is not really about a brain tumour. It’s a celebration of friendship. Ellen pretty much moved in with Charly’s family during this time (‘To be in place when I exploded, so she could pick up the debris,’ says Charly).

The pair live together today, finishing each other’s sentences as we speak on Zoom — and at one point both miming Charly’s brain surgery (with gruesome sound effects).

This sort of silliness rooted their friendship, which started at the age of 14 when they wrote their own plays (Finding Emo, anyone?) while at school together in Abingdon. Charly later moved to New York to study dramatic arts, and Ellen studied at Cambridge.

In 2015, Charly came home for a visit, and went to see her GP (played in the drama by Omid Djalili) about her lack of periods and a blind spot in her peripheral vision. An MRI scan showed a mass on her brain. ‘They said it had eroded the bone in my nose and was pressing on the optic nerve, and it was lucky we had caught it,’ she says. ‘The next step would have been discovering it because I’d gone blind.’

Even worse, the tumour was so close to her carotid artery that removal might kill her — and they still had no idea if it was cancerous. Into the breach stepped Ellen. ‘I saw it as my job to make her laugh, which is what I’d always done anyway,’ she says. They both talk of toppling into limbo, ‘almost like a fantasy world’, says Charly. ‘As I was going through the tests, we’d do impressions of the doctors and create our own scenarios.’

The friends talk about sitting up into the night, watching TV. There is a touching moment when Charly admits she was afraid to sleep, and Ellen knew it. ‘It’s hard when you are thinking “What if the tumour grows another inch in the night and I don’t wake up?” ’

Charly was operated on in March 2016, and Ellen remembers the anaesthetist confiding that Charly’s heart had stopped on the operating table.

‘He wasn’t the most tactful person we’ve ever met. He said “Oh my God, guys, she died”.’ Charly makes a jazz hands gesture. ‘And guess who is alive again?’ Even at that darkest moment, there were flashes of humour. Ellen laughs at the memory of the surgeon in his scrubs, with wellies on. ‘They had blood on them. I was transfixed. I wanted to ask “Is that Charly’s . . . brain blood?” ’

In the stage version of the show, the anaesthetist gets two full scenes. ‘He’s the heartthrob of the piece,’ says Charly. ‘A sexy rugger bloke who is crap at talking to people.’

The days that followed the surgery were hideous — and yet they, too, have been mined for comedy. Charly’s face was bandaged, ‘as if I’d had a Beverly Hills facelift’, and she was warned that she could not sneeze. ‘If I did, bits of my brain would come out my nose,’ she says.

Ellen read her extracts from Harry Potter but ‘made them smutty’, which confused the already confused Charly further. ‘I was drug-addled and not myself, and in the most bizarre pain, concentrated in my face’.

‘That week after the surgery was the worst part of all,’ says Ellen, suddenly serious. ‘She was behaving oddly and there was this unacknowledged fear: was this Charly for ever?’ Oh, the relief when the old Charly eventually re-emerged — albeit a more fragile, often tearful version.

It was Ellen who persuaded Charly to take their stage show about her illness public — and it went on to win much critical acclaim. ‘I wanted Charly to see it as something other than just this rubbish chapter that needed to be forgotten about,’ says Ellen.

For her part, Charly credits her best friend as her saviour: ‘I don’t know how I would have got through it all without Ellen.’

The good news is that Britney was not cancerous, although surgery did not obliterate her entirely. ‘She’s still there, but tiny — just a sludge. I’ve been told that she won’t grow though. If I ever do get another brain tumour, it won’t be Britney.’

Off they go again, imagining what is happening now inside Charly’s brain. ‘Britney is still in there, trying on outfits for a comeback tour, but it won’t happen,’ says Charly. Ellen nods. ‘It’s over,’ she says. ‘But she’s just left a pair of shoes behind.’

Britney is available to watch on BBC Three and BBC iPlayer

Adapted from https://www.dailymail.co.uk/femail/article-10264203/I-laughed-brain-tumour-Id-never-stop-crying-Actress-Charly-Clive.html

Sushmita Sen’s battle with Addison’s disease

December 1, 2025

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It was in 2014 when the actress left her fans shocked when she revealed that she was diagnosed with Addison’s disease. Talking about her condition, Sushmita said that the years she battled Addison’s disease “were pretty traumatising”. After fighting for 4 long years with the chronic condition, the actress healed and emerged stronger by exercising daily.

Addison’s disease is a disorder in which the adrenal glands don’t produce enough hormones. The gland present just above the kidneys starts producing too little cortisol and too little aldosterone. The condition can affect people of all age groups and sexes. The symptoms of the disease develop slowly but can be life-threatening if not treated on time. Extreme fatigue, weight loss, darkening skin, low blood pressure, salt craving are some of the signs of Addison’s disease. Treatment of the condition involves taking hormones to make up for the missing ones. The disease is caused when the adrenal glands are damaged, affecting the production of cortisol and aldosterone hormones.

Post recovery, the 46-year-old actress shared that meditating with nunchaku helped to fight the disease and helped in the healing process. “I healed in time, my adrenal glands woke up, no more steroids, no withdrawals and no auto-immune condition as of 2019,” she had shared. Even after that, Sushmita kept on with her extensive workout to stay fit and healthy. From time to time the actress shares a glimpse of her workout routine which includes yoga, meditation, callisthenics and bodyweight workout.

Adapted from https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/sushmita-sens-battle-with-addisons-disease-and-the-workout-that-helped-her-emerge-stronger/photostory/87988141.cms

Laura, In The Media

November 29, 2025

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After years, mystery ills diagnosed

April 3, 2005
By JANET MARSHALL

On the day her life changed for the better, Laura Zastrow was exhausted. So much so that she almost didn’t go to the Quantico commissary, as she’d planned.

For years, Zastrow had felt run down without knowing why. One doctor chalked it up to depression. But that afternoon at Quantico, a stranger offered another diagnosis: Cushing’s disease.

Rare and often misdiagnosed, Cushing’s causes fatigue, weight gain, hair growth, mood swings, high blood pressure and other ills, all familiar to Zastrow.

The stranger, Jayne Kerns, recognized her own puffy face and hairy arms in Zastrow.

“I said, ‘I feel like I’m looking in the mirror,'” Kerns said.

Kerns encouraged Zastrow to check out a Cushing’s Web site, which Zastrow did. Every symptom listed matched her condition. Her doctor ran some tests, and the results confirmed Zastrow had Cushing’s, a hormonal disorder often brought on by a tumor.

The chance meeting in September 2003 transformed Zastrow’s life. In the months since, she’s had surgery to remove a large tumor on her pituitary gland and rediscovered her old, healthier self.

“My energy is coming back,” said Zastrow, of Locust Grove. “I’ve lost a lot of weight. I feel good. I don’t feel like I’m in a fog anymore.”

Kerns, of Spotsylvania County, has made it a mission to raise as much awareness as possible of Cushing’s since being diagnosed with the disease in 2000. She’s written President Bush asking him to declare a National Cushing’s Awareness Day in April.

Her meeting with Zastrow was first described in a Free Lance-Star profile of Kerns in 2004. At the time, nobody yet knew just how life-altering that meeting would be.

It emboldened Kerns to keep reaching out to people she thinks have the disease. And it gave Zastrow hope for a healthier, more energetic future.

“I was at the point where I was deteriorating so fast that if Jayne wouldn’t have approached me, I honestly don’t know what would have happened,” Zastrow said recently. “Obviously, I didn’t know anything about [Cushing’s], and neither did my doctors.”

For those with the disease, April 8 is the unofficial day to recognize it and the man–Dr. Harvey Cushing–who first put a name to it.

People with Cushing’s suffer from excessive levels of cortisol, the body’s stress hormone. The condition can be caused by long-term use of certain drugs, such as prednisone for asthma.

Often, Cushing’s stems from an overproduction of cortisol by the adrenal glands. The pituitary gland sometimes over-stimulates the adrenals, triggering the problem. Tumors on the adrenal or pituitary often are at the root of the problem, and treatment can involve removing the glands.

Kerns’ diagnosis followed months of maddening efforts to pinpoint why her body deteriorated, and never recovered, after childbirth.

She said she was misdiagnosed many times, and that one doctor, frustrated by her recurrent problems, told her he no longer had time to listen to her and referred her to another physician.

Kerns ultimately had her adrenal glands removed.

Each year, 10 to 15 people out of every million are thought to be affected by Cushing’s, making it highly uncommon.

“Doctors think that Cushing’s is too rare for people to have it,” Kerns said. “And I truly believe that it is not as rare as people think.”

Another local woman, Jennifer Belokon of Fredericksburg, has Cushing’s. She was serving in the Army in Iraq when she began feeling weak and gaining weight, adding 60 pounds in three months.

The Army flew her out of Iraq and sent her to Walter Reed Medical Center. After being diagnosed with Cushing’s, she had her adrenal glands removed.

“Now, I have no adrenaline, no steroids or anything that will help me produce that second wind when doing anything,” Belokon wrote in an e-mail.

Yet she’s resumed exercising and is training to run the Rock ‘n’ Roll half-marathon in Virginia Beach in September. She ran a 10-mile race a few months ago.

“My time was nothing big,” Belokon wrote. “But I was proud of myself for finishing.”

Getting treated for Cushing’s is life-altering, all three women said. Just finding out what’s wrong is profound because a diagnosis often follows months or years of mysterious and unsettling ailments.

“It changes people’s lives when they figure out what’s going on,” Kerns said. “It’s kind of like discovering that you have diabetes, and then you get insulin. You find something that’s going to make you feel better.”

For more information on the disease and its symptoms, which include purple stretch marks, check out cushings-help.com

To reach JANET MARSHALL: 540/374-5527 jmarshall@freelancestar.com
Copyright 2005 The Free Lance-Star Publishing Company.

JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.

Listen to CushingsHelp on internet talk radio

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Woman who couldn’t lose weight diagnosed with a hidden adrenal tumor

November 19, 2025

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  • Naomi Benton, 34, baffled doctors for more than a decade
  • She continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery in 2008
  • Tests finally revealed an orange-sized tumour on her adrenal gland
  • After having it removed she now only weighs 14st, but has 4st of excess skin

By ANNA HODGEKISS

A woman who weighed 32 stone has told how her excessive weight was due to a hidden tumour.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone at age 20 to more than 32 stone.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgeryNaomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery

The mother-of-two failed to drop any weight after her bypass surgery in 2008 and medical staff assumed her huge frame was due to secret snacking.

But when she was hospitalised after a bad fall the following year and her weight continued to balloon, she underwent tests which revealed the hidden deadly mass.

Further blood tests showed she was suffering from Cushing’s syndrome – a collection of symptoms that develop in the body due to high levels of a hormone called cortisol.

The tumour, which had developed on her adrenal gland located on top of the kidneys, had grown to the size of an orange and Ms Benton underwent an eight-hour emergency operation.

Ms Benton, who now weighs 14 stone, needs plastic surgery to remove four stone of excess skin.

She said: ‘I was always fit and healthy but when I hit 20 I started to dramatically put on weight.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone (pictured) at age 20 to over 32 stone
The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone (pictured) at age 20 to over 32 stone

When she was hospitalised after a bad fall and her weight continued to balloon, she underwent tests which revealed a tumour on her adrenal gland. She is pictured in hospital after having the tumour removedWhen she was hospitalised after a bad fall and her weight continued to balloon, she underwent tests which revealed a tumour on her adrenal gland. She is pictured in hospital after having the tumour removed

‘Just after my first pregnancy I managed to put on over five stone despite not changing my diet and just couldn’t drop the weight.

‘I went to the doctors numerous times about the dramatic gain but no-one believed that my weight wasn’t just down to a very unhealthy diet.

‘It was so frustrating, no-one was listening to me when I told them I wasn’t stuffing my face.

‘I was sent to see a dietitian who helped monitor my 800-calorie-a-day diet. Every day I was weak and tired, but still hadn’t lost any weight.

Naomi Benton
Naomi Benton

Ms Benton lost weight quickly after her tumour was removed and now weighs 14 stone. She needs plastic surgery to remove four stone of excess skin (left). She is pictured (right) before her weight loss

‘Even my friends and family were convinced I was eating in secret and complete strangers would tell me I needed to go on a diet.

‘Finally I signed up for a gastric bypass but after the op still didn’t lose anywhere near the kind of weight that was expected.

‘The breakthrough came after I was laid up in hospital for eight months after breaking both arms and legs in a nasty fall.

‘A junior doctor stopped by and asked if he could take run some new tests which finally showed what was wrong.

Ms Benton said: 'Now I'm just glad the tumour was discovered, as I'd hate to think what would have happened if it had gone on for longer'Ms Benton said: ‘Now I’m just glad the tumour was discovered, as I’d hate to think what would have happened if it had gone on for longer’

‘The tests revealed I had Cushing’s syndrome and a large tumour on my right side.’

Just weeks after having emergency surgery, the weight began to fall off her.

Ms Benton said: ‘Now I’m just glad it was discovered, as I’d hate to think what would have happened if it had gone on for longer.’

She has now shrunk down to a dress size 16 and but hopes to reach a size 12 and weigh 10 stone.

She added: ‘I’m a work in progress and I’m taking it in baby steps. I can’t wait to look and feel like my old self again.’

WHAT IS CUSHING’S SYNDROME?

Cushing’s syndrome is a collection of symptoms that develop due to very high levels of a hormone called cortisol.

The symptoms include weight gain, thinning skin, stretch marks and decreased interested in sex.

The condition often develops as a side effect of treatments for inflammation and autoimmune conditions.

It can also develop as a result of a tumour inside one of the body’s glands.

The main treatment is to stop taking the medication that is causing it or to remove the tumour.

If these options are not available, medication can be used to counter the effects of high cortisol levels.

If left untreated, it can cause high blood pressure which can lead to heart attacks and strokes.

It affects about one in 50,000 people.

Source: NHS Choices

From: http://www.dailymail.co.uk/health/article-2510680/32st-woman-lose-weight-diagnosed-hidden-TUMOUR.html

Jayne, In The Media

November 17, 2025

MaryO Adrenal, BlogTalkRadio, Ectopic, Interview, News Items, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , 4 Comments

From http://fredericksburg.com/News/FLS/2004/032004/03092004/1287556

Cushing’s didn’t rob woman of her fertility

Jayne Kerns

Photo by Scott Neville / The Free Lance-Star

Jayne Kerns holds her 5-year-old daughter, Catherine, and 2-month-old son, Brian, at their home in Spotsylvania. Kerns, who was diagnosed with Cushing’s disease two years ago, became pregnant despite her illness, which usually makes women infertile.

 

Baby boy is miracle to mother with Cushing’s disease

By MARCIA ARMSTRONG
The Free Lance-Star

DATE PUBLISHED: 3/9/2004

THERE WAS A moment in 1999 when Jayne Kerns just knew that something was wrong with her body.

The Spotsylvania County resident was tired and irritable. Her muscles hurt. Her hair was falling out.

The silvery stretch marks acquired while pregnant with her daughter Catherine turned into angry, purple streaks. Kerns wasn’t losing the pregnancy weight, either. In fact, the pounds were still piling on.

“I was walking every day, eating right, doing the ‘Best Odds’ diet,” said Kerns, 40. “But, it wasn’t helping. I just didn’t feel right.”

One doctor said Kerns’ complaints were not unusual for a postpartum body. When another told her to exercise more and eat less, she kept a diary of the fat, carbohydrate and caloric content of everything she ate and began walking a mile three times a day.

But, a year later, Kerns was even heavier and her health was getting worse.

The slightest bumps caused her skin to bruise. Hair began to grow on her face and arms. Her eyesight was plagued by double vision, tunnel vision and spots. She had trouble concentrating and was beset with short-term memory loss. Her blood pressure skyrocketed to stroke level. Her menses stopped.

The symptoms worsen

Doctors tested for lupus, diabetes and fibromyalgia, but the results were negative. One physician gave up on a diagnosis, telling Kerns he didn’t have time to listen to her roster of complaints. He referred her to a psychiatrist for a prescription for antidepressants. Another told her to see a nutritionist.

By then, Kerns’ muscles hurt so badly it was hard for her to hold Catherine or let her climb onto her lap. She couldn’t get down on the floor to play blocks with her daughter or push her on the swing set. Bedtime became a struggle.

“I’d go upstairs and she’d run downstairs, and there was no way I could grab her and carry her back up,” Kerns said.

Kerns’ appearance took on that of a much older woman, even though she was only in her mid-30s. She had a hump in her back. Her thinning hair was turning gray. People who didn’t know her thought she was Catherine’s grandmother.

Then, in May 2000, a physician’s assistant told Kerns her symptoms matched those of Cushing’s disease, a hormonal disorder caused by the overproduction of cortisol, the “fight or flight” hormone needed in times of stress.

The diagnosis was a long shot, as the disease is rare, affecting only 10 to 15 people out of 1 million each year, according to the National Institutes of Health.

But, tests revealed that Kerns’ cortisol levels were 25 times higher than normal.

The physician’s assistant was right. Kerns had Cushing’s.

A tumor on Kerns’ pituitary gland was causing her adrenal glands to produce the overabundance of cortisol, but the mass was so small doctors couldn’t find it.

Kerns had four options.

Doctors could remove her pituitary, taking the obscure tumor with it. Or, they could zap the gland with gamma-knife radiation. The third choice was to put Kerns on medication that would lessen cortisol production. And last, she could have her adrenal glands removed.

With any of the choices, she was unlikely to ever have another baby.

“Usually, people who have Cushing’s are infertile because the disease alters the normal endocrine milieu of the body and interferes with ovulation,” said Dr. Fay Redwine, a perinatologist with Richmond-based Central Virginia Perinatal Associates.

In fact, it is so rare for a woman with Cushing’s disease to get pregnant that Redwine said she expects to see only two or three such cases during her medical career.

Baby surprise

Kerns took the cortisol-suppressing medication until it began to destroy her liver. Then, she had her adrenal glands removed.

Immediately after the surgery, Kerns’ eyesight cleared. Her blood pressure dropped to normal levels. And, three months after the operation, something else changed, too.

Kerns became pregnant.

“That was a surprise, a big surprise,” she said. “I was happy to know that I was still fertile.”

The pregnancy lasted only 10 weeks before ending in miscarriage. But, 15 months later, Kerns was pregnant again.

“The first thing I felt was total elation, then total fear of losing the baby,” she said.

Her anxiety was warranted, Redwine said, because the fetus of a mother with Cushing’s is at much greater risk of intrauterine fetal death and pre-term birth.

But, it was during this pregnancy that Kerns began to feel almost normal again.

Her muscles quit aching. Her moods leveled out.

“My body somehow said, ‘We’re going to have this baby, so we have to be healthy,'” she said.

Kerns’ obstetrician, Dr. William Hamilton, increased the dosage of Kerns’ hydrocortisone pills to cover the stress pregnancy put on her body. Redwine monitored the baby’s growth and movements.

And, on Dec. 15, 2003, Brian Matthew Kerns was born, full-term and healthy.

“He is our miracle baby,” Kerns said.

What’s in the future

Cushing’s has taken a permanent toll on Kerns’ life.

The purple stretch marks will never go away. Weight will always be a problem.

Kerns must have a magnetic resonance imaging scan every six months as doctors keep looking for her pituitary tumor.

Kerns regrets that she was so sick when Catherine was an infant and toddler that she couldn’t devote herself to mothering. And, it’s hard for Kerns to keep from crying when Catherine, now 4, doesn’t recognize her in the pre-surgery pictures in the family photo albums.

Even so, life is still very, very good.

Kerns spends her days cuddling her son and playing with her daughter. She’s getting stronger. She feels much better.

She’s thankful that the only effect the disease had on her relationship with her husband, Robin, was to make it stronger.

“Some men can’t handle it,” Kerns said. “I’ve read stories online about women who are getting a diagnosis and a divorce. But, Robin stood by me through everything: the surgery, doctor’s appointments, all the questions.

“He has kissed my stretch marks and said ‘No matter what happens, you are still a beautiful person.'”

Heal and share

But, for all it’s taken from Kerns, Cushing’s has given her something back: the courage to speak out.

She recently contacted Gov. Mark Warner’s office to enlist his support of a national day for Cushing’s awareness.

And last September, she approached a woman in the grocery store who she thought looked like a mirror image of herself: the same moon face, the same upper-body obesity, the same hairy arms.

“Excuse me,” she said to the woman. “I have to tell you my story.”

“I was a little taken aback,” said Laura Zastrow, who lives in Locust Grove. “I’d never heard of Cushing’s.”

Zastrow, 34, told Kerns she’d been looking for a diagnosis for her weight gain, mood swings and stretch marks for four years.

Kerns referred Zastrow to an Internet Cushing’s support group that features a lengthy list of Cushing’s symptoms.

“I couldn’t believe it,” Zastrow said. “It was like me, all the symptoms, everything.”

Tests showed that Zastrow has a tumor on her pituitary. But, unlike Kerns’ tumor, doctors know exactly where it is. She will have it removed this spring.

Zastrow calls Kerns her guardian angel.

“If she hadn’t said anything,” Zastrow said, “I’d still be wondering what in the world is wrong with me.”

For more information about Cushing’s disease, visit the Web site cushings-help.com.

To reach MARCIA ARMSTRONG: 540/374-5000, ext. 5697 marciaa@freelancestar.com

JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

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, all the credit is given to Jayne.

Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.

Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. Archives are available.

Listen to CushingsHelp on internet talk radio

 Subscribe to the CushingsHelp podcasts on iTunes

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Valrie, Pituitary News Item

October 13, 2025

MaryO News Items, Pituitary , , Leave a comment

HOUR-LONG seizures, vision loss in the right eye, and failure to complete sentences are among the challenges that 54-year-old Valrie Anderson has been battling for the last 20 years.

These problems stem from a condition called pituitary adenoma, which is a growth or tumour on the pituitary gland in the brain.

In an emailed response shared with the Jamaica Observer, Anderson’s doctor at the University Hospital of the West Indies, Peyton Lawrence outlined her diagnosis, which has to be treated at Miami Neuroscience Center, Larkin Community Hospital in Miami, Florida.

“After having carefully reviewed your patient’s medical information, in my opinion, Ms Valrie Anderson is a candidate for gamma knife radiosurgery for the treatment of her pituitary adenoma,” the email stated.

According to her sister, Winnifred Anderson Plummer, Valrie began showing signs of the condition while she attended high school but her health got worse during her 20s.

She said her sister’s seizures would last for two to three hours, though the typical time span is usually seconds or minutes before the brain cells return to normal.

“When the seizures became more frequent was when we discovered, after MRI [magnetic resonance imaging] tests, that she had a tumour on the brain. A surgery was done in 2013 at UHWI but since that time the tumour has regrown; it has caused her to have more violent seizures before the surgery and they last for longer periods. Even the doctors that are seeing her when she has an attack, they too are dumbfounded about the length of time her body takes to settle,” she explained.

Anderson Plummer stressed that the deterioration of her sister’s condition has been painful for her relatives.

“We remember how Valrie was – a go-getter. When she was at the bank she was the best at what she did. She left the bank and went into sales and it was the same thing. She is not the person who would sit down and watch the world go by, she wants to be a part of what is making the world go by — that is just how Valrie was — and to see her now it is just heart-breaking. She can’t even open a can of milk,” her sister stressed.

“Valrie is a praying person and she believes that one day the Lord will take away this from her, and I think that is what helps to sustain her as well. I know there is something special about Valrie why God is preserving her,” she added.

Valrie is scheduled to complete the surgery at a cost of approximately $3 million in August, but her relatives are facing financial difficulties and might not be able to source the funds that soon.

Anyone wishing to help can reach out to Anderson Plummer’s email: view2change@hotmail.com

Katelyn, Pituitary Bio (News article)

October 10, 2025

MaryO Interview, News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , Leave a comment

WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.

After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.

The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.

A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.

But soon after that her face started to change.

She said: “Moon face was the first major symptom I noticed.

“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”

Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.

Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.

“I was literally unrecognisable to myself,” Katelyn admitted.

“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.

“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”

Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.

Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”

Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.

“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.

“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”

Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.

“These things are normal as a woman,” one endocrinologist said flatly.

So Katelyn, from Long Island, New York, began doing her own research.

“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.

When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.

“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.

“That’s when I knew it had to be Cushing’s.”

Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.

Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.

“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.

When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.

Katelyn says: “I was the one who connected the dots and pushed for the right tests.

“I trusted myself, and that’s what saved me.”

Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.

“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.

“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.

“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.

“But this too shall pass. It gets better.”

From https://www.thesun.co.uk/health/36966323/moon-face-dismissed-adult-acne-cushings-disease/ – lots of pictures. And ads.

Jordy in the News…Again

September 29, 2025

MaryO Adrenal, Adrenal Surgery, Male, News Items, Treatments , , , , Leave a comment

Jordy’s first bio is here: https://cushingsbios.com/2025/08/25/jordy-pituitary-bio/ and a news item is here: https://cushingsbios.com/2017/04/18/a-new-newspaper-article-on-jordy/

 

Life without fear: The people who can’t feel afraid

On a bright afternoon at Disneyland in 2012, Jordy Cernik strapped himself into a rollercoaster and waited for the familiar rush of adrenaline. The clanking ascent, the plunge into speed—this was the moment his stomach should drop, his heart should pound.

Instead, nothing.

No sweaty palms. No jolt of panic. Just silence in his body where fear used to live.

Jordy, a British man treated for Cushing’s syndrome by having his adrenal glands removed, had lost the ability to feel afraid. Later he would leap out of planes, zip-wire off Newcastle’s Tyne Bridge, and abseil down London’s Shard without so much as a quickened pulse. For him, what most people call terror is just another Tuesday.

And Jordy isn’t alone.

The woman who couldn’t be scared

Decades earlier in Iowa, doctors met a woman known as “SM.” She has Urbach–Wiethe disease, a rare genetic condition that destroyed her amygdala, the almond-shaped brain structure thought to govern fear.

Scientists tried everything: horror films, haunted houses, snakes, spiders. Instead of flinching, SM leaned in. “She had this almost overwhelming curiosity,” recalls Dr Justin Feinstein, a neuropsychologist who studied her. “She didn’t just fail to avoid danger—she sought it out.”

SM can laugh, cry and rage like anyone else. But fear—the instinct that keeps most of us alive—is absent.

Too little fear, too much risk

That absence has consequences. SM has been held at gunpoint and knifepoint more than once. She also stands so close to strangers that researchers measured her “comfort zone” at just over a foot—half the distance most people maintain.

“Her case shows that the amygdala isn’t only about fight-or-flight,” says psychologist Alexander Shackman. “It helps us navigate social life, too.”

When panic breaks through

But fear isn’t completely gone. In a striking experiment, Feinstein asked SM to inhale carbon dioxide—tricking her body into thinking it was suffocating. To her own astonishment, she panicked. It was the first full-blown terror she had felt in decades.

The experiment revealed a split in the brain’s wiring: external threats like predators or attackers rely on the amygdala, but internal threats, such as suffocation, are managed by the brainstem. With her amygdala destroyed, SM’s brainstem went unchecked, flooding her with fear.

Why we still need fear

For most animals, fear is survival. A mouse without an amygdala survives minutes in the wild before becoming lunch. Fear sharpens instincts, makes bodies sprint and hearts hammer. It’s biology’s built-in alarm system.

And yet SM has lived half a century without hers. Jordy, too, moves through the world unfazed by heights, speed, or risk. Their stories raise a tantalising question: in modern life, where predators no longer stalk us, do we sometimes suffer from too much fear rather than too little?

“Fear may once have saved us from lions and cliffs,” Feinstein says. “But today it often feeds stress and anxiety. Maybe the challenge now is learning when to silence it.”

On paper, Jordy Cernik has the kind of courage adrenaline junkies would envy. He has hurled himself from planes, dangled off skyscrapers, and zipped across dizzying bridges without so much as a flicker of fear.

But he insists it isn’t bravery. It’s emptiness.

“I don’t get that rush everyone talks about,” he admits. “It’s not courage, it’s just… nothing.”

That “nothing” can feel hollow. Fear, after all, doesn’t just protect us—it colours life with urgency, sharpens moments, makes victories sweeter. Without it, Jordy says, the world can sometimes feel oddly flat, as if one of life’s most vivid emotions has been erased.

For SM in Iowa, and Jordy in Newcastle, the absence of fear has opened unusual doors but also exposed real dangers. Their lives highlight the strange paradox of fear: too much of it cripples us, too little can leave us vulnerable, but just enough is what keeps us alive and makes life thrilling.

Perhaps that’s the ultimate reminder—that fear isn’t just something to overcome, but something that makes us human.

Source: BBC

 

Louise, Addison’s Disease

September 27, 2025

MaryO Addison's Disease, Adrenal, News Items , , , , , , , , Leave a comment

Arianna Corrieri is still at primary school, but has a responsibility beyond her years.

The 10-year-old helps care for her mum Louise, who for the past five years has struggled with several illnesses, including the rare disorder Addison’s disease – which leave her fatigued and unwell.

That means Arianna has to help her mum take medication and look after her younger brothers, while also getting herself to school.

Now the Motherwell schoolgirl has been nominated for a BBC Make a Difference award, with the winners to be announced next Monday.

For Louise, the impact of her daughter’s help is clear every single day.

“Without Arianna, I wouldn’t be able to get through my day,” she says.

“I know it sounds ridiculous because she is only 10 years old but she genuinely does so much. It’s bonkers given her age but she is really responsible.

“The understanding she has of everything to do with the illness is unbelievable.”

Louise told BBC Scotland News she was previously a bright and bubbly mum until several years ago, when she found herself constantly tired and having to go to hospital regularly.

Doctors eventually diagnosed her with Addison’s disease – a rare disorder of the adrenal glands that means they do not produce enough of the hormones cortisol and aldosterone.

That has left Louise reliant on dozens of tablets to manage the condition and generate hormones artificially, although she recently was able to move onto a infusion pump to help her.

“Steroids keep me alive, it’s as simple as that,” she says.

However Louise was then diagnosed with another condition, gastroparesis.

This means Louise’s stomach digests food slower than it should, resulting in her having a restricted diet – to the extent even drinks like coffee can only be taken a certain way.

The overall result is a constant battle with chronic conditions, leaving Louise with no energy, regular sickness and sometimes low moods.

“The worst time of the day is first thing in the morning,” says Louise.

“I need to take fake hormones to get going, but I will always feel groggy when I wake up, until they take effect.

“Arianna makes sure her brothers are ready to go, checks they’re eating her breakfast and gets ready for school – it’s like she’s the mum at that point.”

Adrenal crisis

Louise’s husband works night shifts, which is why Arianna has to take charge sometimes.

A cheerful girl who speaks enthusiastically about her love for horse riding, Arianna says she tries to do “whatever I can” to help out her mum, from helping her with taking tablets to walking the family’s dog when Louise is too unwell to go out.

She also needs to be prepared for her mum’s condition worsening quickly.

Addison’s disease sufferers can sometimes be struck by what’s called an adrenal crisis – when levels of the hormone cortisol falls significantly in a person’s body.

If left untreated, it can be fatal.

“When you’ve got a long term illness, even when you need to go to hospital, sometimes you don’t want to” says Louise.

“You can be adamant you’re not that bad and don’t need to go anywhere. Arianna knows when to override me and tell me I need to go to hospital.”

Make A Difference awards

Louise explained how some of Arianna’s friends don’t understand why she can’t always go out, or why the schoolgirl is so keen to be around her mum.

She added being nominated for the Make a Difference award, in the Young Hero category, had been a huge boost for her daughter.

The awards seek to recognise those who go the extra mile to improve life across the country.

Arianna will learn at the end of the month whether she has won the honour, with a ceremony taking place in Glasgow and the winners announced on BBC Radio Scotland’s Mornings programme with Kaye Adams on 29 September.

The judge for the award is Sheli McCoy, the CrossFit athlete and weightlifter who is best known as Sabre in smash-hit Saturday night show Gladiators.

“Arianna does more than most adults do,” says Louise.

“She’s an inspiration to everybody and we’re all beyond proud of her.”

From https://www.bbc.com/news/articles/cvgjvy4jz59o

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