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Mike H, Steroid-Induced Cushing’s Bio

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i am a 65 year old male who was diagnose with cushings about 7 yrs ago

i have no adrenal glands that are working

i have to take prednisone to keep me from crashing

am now a diabetic and have heart failure

i spend 99% of my life in bed i am very weak and in pain most of the time , my family doctor keep giving me prenisone and never gave my body a break from this drug so now what caused me to be so sick is what i have too take to stay alive.

my doctors now really dont no that much about cushings so i feel as though i am just stuck ,

 

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In Memory: Ryan Tyler Monds ~ September 4, 2016

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in-memory

 

RYAN TYLER MONDS (FONZ) December 29, 1981 – September 4, 2016 Ryan passed away peacefully and is free from illness and pain. Heartbroken by his passing are his mother Anne (Dave); father Ron (Charlene); brother Cody; stepsisters, Emily and Grace (Kyle); and nephew Nathan.

ryan-mondsAlso mourning his loss are aunts, uncles, cousins, many life-long friends and friends through Cushing’s Disease Awareness.

Respecting Ryan’s wishes, there will be no funeral service. A private family interment will take place at Sunnyside Cemetery.

Donations to Siloam Mission in Ryan’s memory would be greatly appreciated.

Goodbye came too soon. We love you. Miss Me But Let Me Go When I come to the end of the road And the sun has set for me, I want no rites in a gloom-filled room, Why cry for a soul set free? Miss me a little, but not too long, And not with your head bowed low, Remember the love that we once shared, Miss me, but let me go. For this is a journey we all must take, And each must go alone, It’s part of the Master’s plan, A step on the road to home. So when you are lonely and sick at heart, Go to the friends we know, And bury your sorrows in doing good deeds, Miss me – but let me go.
As published in the Winnipeg Free Press on Sep 10, 2016

Michael B, Pituitary Bio

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May 2015 diagnosed
June 2015 ipss
Sept 2015 transsphenoidal surgery fail
January 2016 metyrapone
May 2017 mri and seen something but in a dangerous place
Aug 2017 gamma knife
June 2019 waiting for gamma knife to work

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In Memory: Thomas F. Zachman ~ 1950-2010

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in-memory

 

Thomas “Tommy” F. Zachman, of Windsor, formerly of Toledo, Ohio, died suddenly and unexpectedly at University Hospital in Denver on June 3, 2010, complications of Cushing’s Syndrome.

Tommy was born Sept. 3, 1950, in Toledo. He was a graduate of Rogers High School and the University of Toledo and the University of Toledo Law School. He practiced law in Ohio. Most of his career was spent with West Publishing in Cincinnati which enabled him to enjoy extensive travel throughout the United States. He left his position at the company when it was sold.

He was an animal lover and always enjoyed his family dogs. He also enjoyed cycling, music, college sports and reading. Tommy was always available to help others with their problems.

 

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In Memory: Gregory J. Bart Jr., 2016

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in-memory

Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


More information when it becomes available.

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Tim D (TimD), Undiagnosed Bio

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I’m going to tested and pretty sure i have it.

I don’t know what to put here except I was am glad I finally getting tested since reading stuff on the net I see I have a lot of the side effects and it sorta clears things up some,

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Jessica and Justin, Siblings In the Media

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From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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