National Institutes of Health

Long-Term Follow-Up of Survivors of Pediatric Cushing Disease

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Sponsor:
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Brief Summary:

Background:

The pituitary gland produces hormones. A tumor in this gland can cause it to produce too much of the hormone cortisol. Too much cortisol in the body causes Cushing disease. This disease causes many problems. Some of these problems might persist after the disease is cured.

Objective:

To find out the long-term effects of exposure to high levels of cortisol during childhood and adolescence.

Eligibility:

People ages 10-42years who were diagnosed with Cushing disease before age 21 and are now cured and have normal or low cortisol levels

People related to someone with Cushing disease

Design:

Participants will be screened with a medical history.

Participants will complete an online survey. This will include questions about their or their child s physical and mental health.

All participants will be seen at 5 -year intervals after cure of Cushing disease (5yr, 10yr, 15yr, 20yr (last visit))

Participants who have a relative with Cushing disease will have a medical history and blood tests or cheek swabs.

Participants who have the disease will have:

Physical exam

Blood tests

Cheek swab

DXA scan: A machine will x-ray the participant s body to measure bone mineral content.

For participants who are still growing, a hand x-ray

Participants with the disease may also have:

Hormone stimulation test: Participants will get a hormone or another substance that will be measured.

Serial hormone sampling: Participants blood will be measured several times through a thin plastic tube in an arm vein.

Urine tests: Participants urine may be collected over 24 hours.

MRI: Participants may have a dye injected into a vein. They will lie on a table that slides into a machine. The machine will take pictures of the body.

Read more https://clinicaltrials.gov/ct2/show/NCT03831958#eligibility

👁 Cushing’s Book Review: True story of woman’s abuse is open, honest

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Review By Colin Harrington

“The Shattered Oak: Overcoming Domestic Abuse and a Misdiagnosis of Mental Illness,” by Sherry Genga and published by Safe Goods Publishing in Sheffield, is based on a true story. It is a story of open and honest reflections of personal experience with domestic abuse, the profound realities of recovery and a startling, and ultimately triumphant, resolution.

The story ends well through the interventions of a therapist, a very sharp nurse and the National Institute of Health (NIH). Or. as the story’s hero describes it, “a little slice of heaven carved out just for me.” This is a story of straight-forward disclosure in the first-person narrative that informs, inspires and provides one person’s path through the wilderness of family dysfunction, abusive hardships in the extreme and extraordinary insights.

Narrator Barbara’s “whole life changed” when she married the charming, intelligent and talented man named Innocent. Barbara could not have predicted how horrendously violent and abusive Innocent would become, in spite of how he provided so well for her and her three daughters and created a lovely, upscale home for them. Barbara is “drawn to putting (her) thoughts down on paper.” Her journal entries are a solace and a method of keeping track of reality. With her husband’s lies and her discovery of shocking secrets of his past life, Barbara recalls her past in order to fathom how she finds herself in a relationship with a man who brutally beats her regularly. The fact is, she remembers a childhood without love, extreme poverty and want, and with these revelations, a deeper understanding of herself. She is also well aware that her husband, too, suffered torment and abuse himself while growing up in an alcoholic family.

In spite of the kindness of a therapist and a courageous divorce in which she attains freedom from abuse for herself and her daughters, Barbara cannot shake a profound depression that leads to three suicide attempts. Deeply religious and spiritual, Barbara prays for enlightenment, or at the very least, a release from mental torment. But when she is committed to a mental hospital, she experiences a jolting loss of personal freedom and brutal treatment. It seems that she has gone from a life of torment to a life of torment in a new kind of hell. But through the attentive and kind professionalism of a nurse named Nancy, who notices markings on her body that seem to indicate Barbara has an undiagnosed medical condition, just recently discussed in medical journals, Barbara is released on medical advice to an NIH hospital in Bethesda, Md. It is at that point that her story mercifully changes for the better in her climb to effective treatments for Cushing’s disease, pituitary cancer and a chance to recover her life.

Barbara’s treatments at that time were part of a ground-breaking clinical study. The effects of high degrees of stress are just now being understood when it comes to trauma and abuse. New insights into Post-Traumatic Stress Syndrome and Cushing’s disease are important medical aspects of domestic abuse situations. This book is a good resource for those in need of help and it tells of how one heroic soul faced down extremes of abuse and trauma with love and determination to recover her life.

In her post script, the author writes, “Some stories are meant to be a secret and some stories are meant to be forgotten. Some stories need to be heard to help the survivor live. There is help for women battling domestic violence, child abuse, suicide and Cushing’s disease.” There are links and resources for that kind of help at the end of the book.

Colin Harrington is the events manager at The Bookstore & Get Lit Wine Bar in Lenox. He welcomes readers’ comments at charrington686@gmail.com.

From https://www.berkshireeagle.com/stories/book-review-true-story-of-womans-abuse-is-open-honest,571606

✍️ Day 22: 40 Days of Thankfulness

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Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

⁉️ Can You Help? Adderall and Cushings

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Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

📺 NIH: Discovery Channel’s Documentary Series ‘First In Human’

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Unprecedented Access Inside the National Institutes of Health’s Building 10
Premieres August 10

Directed by Emmy® Winner John Hoffman; Produced by McGee Media

Near the nation’s capital, on the campus of the National Institutes of Health, sits Building 10: the largest hospital in the world devoted solely to research. Inside, our country’s most brilliant scientific minds carry out some of medicine’s riskiest and most critical research, testing new treatments in people for the very first time.

With unprecedented access to the halls of Building 10, First in Human reveals for the first time how the medical breakthroughs of tomorrow make their way out of the hi-tech research laboratories and into the hands of our world’s medical professionals. The series explores the lives of the doctors, researchers, and patients who together make progress possible in this cutting-edge testing ground. Narrated by Emmy,® Golden Globe®, and Critics Choice® winning actor Jim Parsons (“The Big Bang Theory,” “Hidden Figures,”) directed by Emmy winner John Hoffman, and executive produced by Hoffman and Emmy winner Dyllan McGee, the three-part documentary series begins airing in August 10 at 9pm ET/PT exclusively on Discovery.

Because the treatments they’re testing are so new and their outcomes are entirely unknown, the doctors leading first in human trials at Building 10 can only partner with patients who have exhausted the options the medical establishment has to offer. This doctor-patient partnership is utterly unique to medicine: live or die, each of these brave “first in human” volunteers immediately becomes part of medical history. Previous trials in the building led to the development of modern chemotherapy treatments, the first treatments for HIV/AIDS, and the first successful gene therapy.

First In Human represents the first time cameras have embedded in Building 10 and followed first in human patients throughout their entire trial. This unique access is the product of Hoffman’s nearly twenty years of filmmaking in partnership with the NIH on projects such as The Alzheimer’s Project and The Weight of the Nation.

“NIH’s Building 10 has given generations hope when they need it most,” comments Rich Ross, Group President, Discovery Channel, Animal Planet, Science Channel, and Velocity.  “We are proud that the NIH has invited Discovery inside their doors for an unvarnished look at how these brave men and women work hand in hand with their doctors and technologists to seek cures to the most confounding diseases that exist.”

“Because of the very nature of first in human trials, most of the patients who enter Building 10 to enroll in them are remarkably unique: all standard care out in the world has failed them,” says Hoffman. “What was most powerful about embedding in Building 10 and following these trials was observing how the doctors and patients came to rely on each other in a true partnership to advance medicine.”

States Parsons, “I know that everyone who watches First in Human will feel the same sense of pride I did when I discovered this incredible institution that our country created. I hope viewers will share the sense of gratitude and awe that I felt when learning about the human beings who bravely put their lives in the hands of some of our most innovative scientists and doctors as they search together for the medicines and cures that give all of us fuller, longer lives. This is truly the story of how we, as human beings, function: both at an elemental level and at our most profound.”

“The NIH Clinical Center’s more than 60-year history has resulted in remarkable medical advances, from the first use of chemotherapy to treat cancer, to the development of the technique to keep the blood supply clean and safe from viruses,” said NIH Director Francis S. Collins, M.D., Ph.D. “For millions of patients around the world, it is known as the National Institutes of Hope.”

From leukemia to sickle cell disease to the rarest diseases on the planet, First in Human captures the stories of the doctors, researchers, staff, and, most importantly, the patients and families in this remarkable facility that together are pushing far into the unknown.

FIRST IN HUMAN is produced by McGee Media for Discovery Channel.  The series is directed by John Hoffman; produced by, John Hoffman, Beth Wichterich, and Michael Epstein; narrated by, Jim Parsons; executive producers Dyllan McGee, Jim Parsons, Todd Spiewak, and Eric Norsoph; producer, Jon Bardin; supervising producer, Stacia Thompson; senior editor, Adriana Pacheco; director of photography, Simon Schneider.  For Discovery Channel, supervising producer, Jon Bardin; executive producer, John Hoffman.

 

From https://corporate.discovery.com/discovery-newsroom/jim-parsons-set-to-narrate-discovery-channels-documentary-series-first-in-human-the-trials-of-building-10/

Rally for Medical Research Hill Day

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Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research.

The purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.

The next Rally for Medical Research Hill Day is Sept. 22, 2016.

Sign up to receive updates, including a link to register once it becomes available.