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In Memory: Kate Myers ~ June 23, 2014

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Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

Melissa, Pituitary Bio

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I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.

I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.

I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.

The back and hip pain were so intense I couldn’t walk on my own so I had to use  a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.

Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.

Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.

Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain.  I am taking  magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned.  Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.

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Mak M, Pituitary Bio

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My name is Makena, I’m a 20 year old in California recently diagnosed with Cushings.

I have been having a really rough couple years with a multitude of symptoms. I have been suffering from severe depression since I was around 14, and have been prescribed an endless amount of antidepressants over the years. None of them have worked for me no matter the dose or brand.

The first symptom to cause me to visit the doctor was an extremely high blood pressure and pulse rate. I could always feel my heart pounding in my ears and felt on edge 24/7. My psychiatrist first told me it was anxiety and put me on anti-anxiety medication. That did not help, which led me to see my primary Dr. since my resting heart rate was around 150bpm. I have been put on blood pressure medication which has helped regulate me but I still feel very on edge.

My blood tests show very low vitamin D, very high testosterone, and very high cortisol. My Dr ordered an MRI on my brain and a CT of abdomen. The CT came back normal, but a 6mm microadenoma was found on my pituitary gland so I was referred to an endocrinologist. After doing a 24hr urine test and a saliva test, the results for that came back normal.

My main concern being: I can only physically feel my cortisol levels rise at night. I’ve had severe insomnia and daytime fatigue but the jittery and anxious feeling comes at night and then I crash during the day. I have had severe weight gain in my stomach and face as well as purple stretch marks all over. Losing hair, light sensitivity, vision loss, muscle and bone weakness, easily bruising, a stomach ulcer, a buffalo hump, and constant fatigue have ruined my life. I feel like my body is deteriorating and am not the same person I once was.

I’m hoping I will be able to get surgery to remove the tumor but am concerned that I won’t be approved for it because some tests came back normal. I am not sure what my next step will be but am happy to find stories I can relate to here on this website.

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Jayne, In The Media

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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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Sahana (Sahana), Adrenal Bio

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My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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Danielle G, Pituitary Bio

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The pituitary gland

 

During pregnancy it’s expected for women to gain weight and sometimes struggle to lose it after giving birth.

Danielle Gselmann felt her health dramatically deteriorate five years ago, soon after she found out she was pregnant.

The Gold Coast mother had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.

Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.

Danielle went with her personal trainer husband Dean to get checked out and doctors assured her she was fine, claiming the symptoms were related to her pregnancy.

However, Dean was not convinced of the diagnosis because Danielle continued to eat healthy and work out but was still feeling terrible.

After piecing her symptoms together and doing extensive research, Dean believed Danielle was suffering from Cushing’s disease.

They went to a specialist to confirm Dean’s hunch and their worst fears were realised.

According to the Healthline, Cushing’s disease is caused by a tumour on the pituitary gland in the brain. This tumour then produces an abnormally high level of the hormone cortisol.

It is an extremely rare disease, affecting 10 to 15 people per million each year.

Speaking to Sunshine Coast Daily, Danielle said the disease affected her everyday life and took a dramatic toll on her family, causing her to miss out on watching her son grow.

‘Physically my body broke down…mentally I went numb,’ she said.

‘It affected everything…I missed so many moments because I can’t remember any of it’.

On July 19 Danielle had brain surgery and had the non-cancerous tumour successfully removed.

However, it will take two years for her pituitary gland to function on its own once again, and is warned she may continue to experience the harsh symptoms.

She was prescribed steroids to help manage the dramatic change her body has to cope with low cortisol levels, the publication reported.

The Gselmann’s now hope to raise awareness of the rare disease.

They have also launched a GoFundMe page requesting support for the family to look after Danielle as she recovers.

From https://en.brinkwire.com/news/gold-coast-mother-diagnosed-with-cushings-disease/

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Woman with hump on her neck diagnosed herself with Cushing’s disease

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Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012

A woman who lived with unexplained weight gain and debilitating symptoms is finally getting her life back after diagnosing herself with a rare hormonal condition.

Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012. She consulted doctors, but they were unable to identify the cause.

As time went on, the music consultant and video director,from Santa Fe, New Mexico, noticed that her hair was falling out, her skin bruised to the touch, her face was increasingly round, and her bones were becoming more fragile, with her foot breaking unexpectedly.

Her anxiety increased, and Jennifer, who also suffered from debilitating migraines, consulted her doctors again. Experts told her she might have a thyroid problem, bad genes or the start of osteoporosis.

‘I was training for an athletic event and started noticing that I was gaining weight, not losing it. I was losing muscle, not gaining it,’ Jennifer said, recounting her symptoms. ‘Shortly after that my blood pressure shot up through the roof.

‘My face was taking on a moon shape, very round and chubby. My anxiety was so high. Unbelievable migraines. I’d explain all these things to doctors for years and nobody would listen to me.

‘They said I may have a thyroid problem, or I may be getting osteoporosis, or I just had bad family genes and I would have to struggle to stay a good weight. But none of it made sense. I was even referred to a therapist because they said I was making up too many symptoms to make sense.’

To Jennifer, none of these explanations seemed plausible because she was working out twice a day and eating a vegan diet.

It wasn’t until she noticed a hump growing on the back of her neck, known as buffalo neck, that she googled her symptoms and found they matched those of Cushing’s disease.

Jennifer had always thought the bump was due to her ‘terrible posture’, but she discovered the hump was in fact a symptom of the condition.

‘One night I was looking at it and I was so disgusted so I googled the words “fat on back of neck”, and this thing called buffalo neck came up,’ she said. ‘From there, everything unfolded. I found Cushing’s disease and it was every symptom I had to a T, everything down to my foot breaking out of nowhere.

‘I took this information to my doctor and he was the only one who listened to me. He helped me and the rest is history. He himself was amazed I diagnosed myself with such a rare disease.

‘In my best description I would say Cushing’s slowly attacks different areas of your body. You literally experience pain and symptoms from head to toe, and it felt like each week I was waking up to something new.

‘I was able to maintain a somewhat tolerable weight before this because I became obsessed with working out and eating healthy because all this time I just thought I couldn’t lose weight. My doctors mentioned that if I hadn’t done all of this activity then I would have been in much worse shape. I’d easily be over 200 pounds, may have diabetes, osteoporosis, the list goes on.’

Cushing’s disease develops when the body makes too much cortisol. The condition often develops as a side effect of treatments for inflammation and autoimmune conditions, but can also develop as a result of a tumor inside one of the body’s glands.

The main treatment is to stop taking the medication causing it or to remove the tumor. If left untreated, the condition can cause high blood pressure, which can lead to heart attacks and strokes. It affects about one in 50,000 people.

Jennifer found out she had a tumor on her pituitary gland that caused the body to overproduce cortisol.

Thanks to her active lifestyle, Jennifer’s weight gain, which saw her going from 105 pounds to 145 pounds was not as significant as it could have been.

Jennifer had surgery in August last year to remove the tumor on her pituitary gland and has been rebuilding her life ever since.

For Jennifer, recovery has been more difficult than living with the condition itself. She sometimes struggles to get out of bed as her body adjusts to producing less cortisol, meaning she feels less energetic.

However, her symptoms started to disappear almost instantly after the operation.

‘After surgery my symptoms quickly started to disappear like rapid fire. It was crazy,’ she said. ‘My weight dropped. I stopped bruising. The hump on my neck went down. My bones healed. My hair grew back. My face returned to its normal shape, and the best part, my blood pressure returned to normal.

‘My friends and family are amazed. Every time I see someone new they say I look like a completely different person.

‘Recovery is hard. I’m still going through it. Believe it or not it’s been harder than the actual disease. When your body is used to producing so much cortisol to all the sudden be producing nothing, your body crashes.

‘Some days it’s hard for me to get out of bed and move, I’m tired all the time and have zero energy. I’m only able to walk at the gym maybe two days a week. I’m currently on cortisol replacements so that my body levels out. Every two weeks I reduce my medication because the goal is to be completely off it and have a normal functioning pituitary gland.

‘However, every time I reduce my body crashes all over again, so it’s like a never-ending cycle. But I know that someday it will get better so I’m getting through it.’

Jennifer, who has been charting her progress on Instagram, shared her advice to others who might be suffering from similar conditions.

‘Never give up trying to find an answer and push your doctors to listen to you,’ she said.

‘If I hadn’t discovered this on my own I’d probably still be suffering.’

Read more:http://www.dailymail.co.uk/femail/article-5450135/Woman-diagnoses-rare-hormonal-condition.html

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