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A Stunning Woman Reveals The Devastating Secret Behind Her Weight Gain

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Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.

Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.

The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.

But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.

After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.

Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.

“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.

”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.

“I felt bloated all the time and I didn’t want to leave the house.

“I continued working out at the gym not realising I was causing damage.”

In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.

Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”

Despite numerous tests, medics continued to deny there was anything wrong.

The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.

She said: “I took my MRI and CT scan and they saw the tumour was in my brain.

“My hospital had completely mis-read it.”

After further tests, doctors were able to confirm it was a brain tumour.

She said: “I’m not sure how long I had the tumour. I thought I was going to die.”

After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.

She said: “Two days after the first surgery and my feet were normal.

“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.

“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.

“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”

The road to recovery has been long and after eight months, Vicki still has a way to go.

But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.

She said: “It’s a slow process.

“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.

“But I am starting to see improvements and I’m just focusing on my son and school.”

Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.

“He’s the most important thing, I couldn’t have got through this without him.”

From http://www.dailystar.co.uk/diet-fitness/594013/Gain-weight-bikini-fitness-model-brain-tumour

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Sam in the News

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Sam is Jackie’s daughter.  There is more info about their family’s Cushing’s experiences here: https://cushingsbios.com/2013/06/23/jackie-samsmom-adrenal-bio/

Sam and her mom also participated in a Cushing’s Help interview which you can read here: http://www.cushie.info/index.php/cushing-s/about-us/interviews/207-sam-and-her-mom-jackie-february-2-2005

And one to listen to on BlogTalkRadio at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

This article was posted by long-time message board member Samsmom about her daughter Sam.

AIM senior Samantha Edgar doesn’t let health issues hold her down

superkidedgar

SNOHOMISH — Samantha Edgar, 17, has faced limitations with serious health issues, including Addison’s disease and osteoporosis. But the AIM High School senior is overcoming them in amazing ways.

Question: Your school administrator says you come to school every day with a smile despite some serious health challenges.

Answer: I’ve had adrenal deficiency since I was 4 years old because my adrenal glands were infected with a lot of tumors. The guy who diagnosed me (Dr. Constantine Stratakis) I’m actually doing an internship with this summer at the National Institutes of Health. It’s pretty nerve-wracking. It will be fun.

Q: Wow. How did you end up with that?

A: (My mom and I) were talking about asking for an internship, and joking that he’d probably just say apply, like he normally does. … I asked “if I can maybe shadow you this summer and, um, hang out?” He was like, “Of course.” All the interns just stared at me. (Most of them are in medical degree programs) who’ve applied five times.

Q: What do you hope to get from it?

A: I’m hoping to understand my own thing a little bit more afterward, and then have opportunities after that stem from it. It’ll be interesting at least.

Q: Your mom is planning to rent an apartment and live out there with you.

A: I’m still her baby. … If anything, though, it’s the best place to have an issue.

Q: Your last life-threatening experience was when you were 10. You had the flu and were unable to keep down your medications, which you need to take three times a day. What other issues are you susceptible to?

A: If I am to break a bone or something I could go into what’s called adrenal crisis. (The body) goes into shock.

Q: And yet …

A: I do mounted archery, which is horseback archery. My mom is pretty much nervous every time I go down the course because I’m probably going around 30 (mph) and shooting an arrow at a target or five.

Read the rest of the article here: http://www.heraldnet.com/news/aim-senior-samantha-edgar-doesnt-let-health-issues-hold-her-down/

samhorse

 

Donelle T, Pituitary Bio

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Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.

He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.

“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.

It was especially puzzling because Trotman had never had weight issues before.

In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.

So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.

“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”

To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.

In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.

“I doubled, like, I got a whole person on me,” he said.

There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.

Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.

Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.

Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.

“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.

There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.

“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”

These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.

“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.

Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.

One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.

From http://www.today.com/health/after-gaining-120-pounds-1-year-rare-diagnosis-saves-mans-t6561

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Year End Report

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Screenshot 2015-12-29 19.42.02

 

Read the whole report here (Looks like I need to add some December bios!)

After gaining 120 pounds in 1 year, rare diagnosis saves man’s life

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Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.

He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.

“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, “Medical Mysteries,” looking at people who have recovered from rare diseases.

Donelle Trotman, right, reached 366 pounds at his heaviest.

It was especially puzzling because Trotman had never had weight issues before.

In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.

So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.

“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”

To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.

In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.

“I doubled, like, I got a whole person on me,” he said.

There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.

Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing’s disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.

Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.

Dr. John Boockvar and Dr. Peter Costantino at New York’s Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.

“In Cushing’s disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.

There was no time to lose: Untreated, Cushing’s is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.

“The tumor was no bigger than the size of the tip of my pen,” Boockvar said. “And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable.”

These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.

“It’s wonderful. Every day it’s just like I feel a little stronger,” he said.

Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.

One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing’s, although doctors stress it is a very rare illness.

via After gaining 120 pounds in 1 year, rare diagnosis saves man’s life – TODAY.com.

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Brain tumour survivor draws comfort | Toronto Star

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Erella Ganon has a brain tumour, and she wants everyone to know about it.

The 56-year-old woman has had brain surgery three times, had both of her adrenal glands removed and been through multiple bouts of radiation.

Ganon chronicles her health journey through a series of images in what she calls a “graphic autobiography.”

It’s a habit she got into as teenager. Every day she uses fountain pens to draw a picture of what she’s experiencing.

For the past decade those pictures have illustrated her battle with Cushing’s disease, a rare disorder that makes her pituitary gland release too much ATCH (adrenocorticotrophic hormone), stimulating the production of cortisol, a stress hormone, creating tumours.

Ganon shares her images on an online blog that in turn offers inspiration and comfort to others struggling with illness.

The hand-drawn pictures present an open and often humorous look at life with disease. The images are instantly relatable and depict everything from hair loss to hospital food.

“Everybody who’s touched by catastrophic disease… has a feeling of powerlessness, but the artwork and putting it out there is the opposite of that,” said Ganon.

via Brain tumour survivor draws comfort | Toronto Star.

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Right diagnoses, drugs help woman return to normal life

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You could almost say things have returned to normal for Patricia Kleinhoffer in her family’s home, if there was a such thing.

What with living in a house with her husband, mother, brother, and four of her five non-biological children, things tend to get a little hectic, Patricia said.

“There’s no such thing as normal in this household,” she said.

But that’s just fine with Patricia, who welcomes the chance to spend more time with her family — that is, while she’s not working on her master’s degree.

Gone is the need for a nap every few hours; gone are the debilitating migraines; gone are the anxiety attacks that make it difficult for her to leave her home.

Those symptoms, a result of the Cushing’s syndrome she was officially diagnosed with in 2009, have largely subsided. Since she began taking mifepristone, which became Food and Drug Administration-approved in 2012, she also has lost almost 100 pounds and has seen a drop in blood pressure.

“I feel like a person again,” she said.

Cushing’s is a disease in which patients produce too much cortisol, a steroid hormone. It can produce tumors, diabetes, infections and other symptoms if left untreated and can even be fatal.

Patricia also had tumors, though hers were unrelated to her Cushing’s.

The medication, sold under the brand name Korlym, is a cortisol receptor antagonist, said Dr. M. Tufail Ijaz, an endocronologist at Genesis HealthCare System in Zanesville. Though it doesn’t cure patients like Patricia of Cushing’s, as they still produce cortisol, it does prevent the cortisol from taking effect.

Endocrinologist finds fulfillment in local practice

Ijaz, Zanesville’s only endocronologist, has five patients, including Patricia, currently taking the medication. Just hundreds are taking it across the country, he estimated.

On a recent weekday evening, Patricia sits on her couch surrounded by much of her family.

Though she and her husband Chris have never been able to have their own children, they’ve taken custody of five, four of whom are relatives from Patricia’s side of the family. All of them have some sort of developmental disability, she said.

At 5 p.m. on this day, the house is bustling, as four of the five kids still live there.

It’s moments such as these that Patricia said she’s glad to have back.

Not too long ago, her Cushing’s was exhausting her daily. She could barely stay awake more than two hours at a time, her memory was poor, and her weight made it difficult to even move around. Perhaps the most frustrating aspect, Patricia said, was seeing the toll it took on her children, but especially Chris, who became the main caretaker for the children.

“When you’re like that and you’re in that position, you feel useless,” she said. “It was hard for me to watch the effects it had on my family.”

Many of the symptoms started appearing long before her diagnosis, she said. Though she’s now 47, she remembers seeing signs of Cushing’s as early as her 20s. One of the first things she remembers noticing was a bump on the back of her neck, which she described as a buffalo hump.

But in the years to come, the depression, weight gain and diabetes began.

Her condition left her doctors and family searching for answers.

“We didn’t have a clue what was going on inside,” Chris said. “She was eating like a bird and she was gaining weight.”

Many of Cushing’s symptoms mimic other diseases, making it difficult to diagnose. Though she was seeing specialists in Columbus, she was never tested for Cushing’s.

“You can’t blame a lot of people for missing that diagnosis because it comes in stages,” she said.

After working for nine years as a staff assistant in the Genesis radiology department, she quit her job as her mental condition worsened. After she had her first brain surgery in 2008 to remove a tumor, she took a break from undergraduate school at Ohio University-Zanesville, as a traditional class setting became too much to handle.

Then in 2009, Ijaz opened a practice in Zanesville, and Patricia signed up for an appointment. The first thing Ijaz asked her was whether she had ever been tested for Cushing’s.

After tests came back positive, she had another brain surgery, underwent radiation treatment, and took several medications. In the meantime, Ijaz had learned of a new medication awaiting FDA approval: mifrepristone.

“We were waiting for it, waiting for her specifically,” Ijaz said. “When it came (in 2012), we started her.”

Patricia got her bachelor’s degree in 2013. She’s now taking online classes at OU-Z to get her master’s degree in applied behavioral analysis. She said she hopes to be back to work within a year, this time with the goal of working with at-risk youths and adults.

Throughout her ordeal, Patricia has maintained a sense of humor. As she sits in her home, surrounded by family, she deadpans about her weight gain and other symptoms.

She downplays her trials with not only her sense of humor but also her humility. Though she said she’s typically a private person, she wants to be an advocate for others going through something similar.

“People look at it like it’s some amazing thing and it’s not,” she said. “It’s just living.”

elagatta@zanesvilletimesrecorder.com

From http://www.zanesvilletimesrecorder.com/story/news/local/2015/05/30/right-diagnoses-drugs-help-woman-return-normal-life/28224447/

 

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