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Erin T, Pituitary Bio

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pituitary-location

 

After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.

One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).

On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.

On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.

I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.

6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.

I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.

 

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Voices from the Past: Cheryl, Bilateral Adrenalectomy Patient Bio

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Recently had both adrenal glands removed 5/7/20 after 2 failed pituitary surgeries due to Cushings disease.

Cheryl huth 63 yrs old married to David Huth  live in Mount Dora florida.

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In Memory: Erica Michelle “GaGa” Meno ~ March 6, 2015

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in-memory

Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.

I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.

Erica’s official obituary: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.

In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.

She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

~~~~~~

Some of the comments from other Cushies:

My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.

~~

Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,

~~

My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.

~~

I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!

~~

 

Nancy, Pituitary Bio

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The pituitary gland

The pituitary gland

I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order. 

In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.

I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.

I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.

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Kelly (Kelly Jo), Pituitary Bio

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pituitary-location

 

My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe.  Dr fixed me and sent me on my way.

About two weeks later I developed a PE and was in ICU for 5 days.  It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did.  They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.

So off for test I went and it was confirmed.  At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.

I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE.  We all thought the surgery was a success but three years later back it came.  So another surgery in Jan 2011.  Then again three years go by and it’s back.

This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation.  I am now in wait mod to see if it that worked and let me tell you it’s no fun.  Not knowing and not going to know for sure for a year or two is really hard.

The meds I’m on (Korlym) really make me sick too.  I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.

Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option.  I will never be done with it, as none of us will.

I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel.  I say I just want to be normal and me again but honestly I don’t even know what that is.  So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.

Good luck to us all!
Kelly Jo

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Kathleen (ForegoneLegacy), Pituitary Bio

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golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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Voices from the Past: Stefanie, Pituitary Bio

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The pituitary gland

I was diagnosed 2012 and had pituitary surgery done 2013. I am currently on medications.

I’m curious to talk with other Cushings patients. I don’t know anyone with the disease and have actually never even had a conversation with someone with cushings. It would be nice to relate with someone.

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Mary H (Marietta), Adrenal Bio

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In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.

It all started in late 1974, when I started having lots of illnesses and was depressed.  I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.

Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.

All through late ’74 and 1975, I was back and forth, even with a dx of pregnant,  (which made evryone happy, as I was married Feb 1974.  But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks.  Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I  had what was then called a “nervous breakdown,” so again I was hospitalized.  THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX.   Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.

He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease.  It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.

I had the nose surgery, very new at the time,  but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back).  I did not know at the time that there was an 85% chance of surviving that surgery.

Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take  it the rest of my like.  I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone.  I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled.  There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again).  I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis.  After 4x in the ER, I vomited blood and collapsed.  It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime.  Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time.  I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.

In 2000, I was dx with diabetes, which runs in my family, and at  64 years  old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).

Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs.  Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing.  The cortisone was 25 mg daily and around 1993-94, I started gaining weight.  A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone.  He said the prednisone did not cause weight gain– he was right.  I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less).  I started out with this at .1 mg  once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.

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Amber D, Pituitary Bio

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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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Laura, In The Media

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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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