Have You Been Diagnosed With Cushing’s? Earn $125-$250
We invite you to help us create better information, tools, and resources for people with Cushing’s Syndrome
How: Share your opinions and give input in a one-on-one confidential interview. Your opinions will remain confidential. The overall results will help others with Cushing’s Syndrome.
When: Market research interviews can be conducted by phone or in-person, in a location near you. The interview will last approximately 45 minutes.
If you are interested in a phone interview or in-person interview, please contact Clair Carmichael Johnstone (see details below). More information (including cities and locations for in-person interviews) will be provided on the phone.
Am I Eligible? If you’ve been diagnosed with Cushing’s Syndrome and still experience symptoms of Cushing’s you are eligible to participate. Cushing’s Syndrome includes: Cushing’s Disease, ectopic Cushing’s and adrenal Cushing’s. Patients should have been diagnosed within the last 10 years.
At this time, patients who are in remission, were diagnosed more than 10 years ago, or have had a bilateral adrenalectomy are not eligible for research.
Details: Participants eligible for market research will be asked to participate in the 45-minute interview. Patients participate also receive an honorarium (payment) for your time. Those who participate in an in-person interview will be compensated $250 and those who choose a phone interview will receive $125 for their time.
Why? Corcept Therapeutics is interested in hearing from people who suffer from Cushing’s Syndrome in order to improve treatment and information available. This can lead to improved education and resources for those with Cushing’s and physicians treating Cushing’s.
How do I find out more?
If you have questions or would like to participate, please contact Clair Carmichael Johnstone at:
Toll-free number: (800) 856-6706, or
E-mail: cushing@compasshc.com
Please provide your name, phone number, and the best times to reach you so we can follow up promptly.
Cushing’s and Cancer – the Reality of it all
This post is by Judy, a long-time message board member who is in the middle of Cushing’s patients. Both children and her ex-husband have dealt with Cushing’s. Judy is a Cushie-Blogger.
She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html
Okay, I’m probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost…….
I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn’t good (understatement).
Now here is the *but* & my own little personal rant.
A Cushing’s patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn’t accomplish something that day.
4.Being able to find an understanding doctor that isn’t halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn’t feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn’t have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.
This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn’t usually affect every system in the body. If you get a cure from cancer you aren’t usually left with permanent damage to random body systems.
Statistics say that Cushing’s is rare. I know it’s not. As the Cushie community says – it’s just rarely diagnosed. Most people think they don’t know anyone with Cushing’s. Most people would be wrong. They just don’t know a diagnosed Cushing’s patient.
That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing’s. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing’s. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing’s. You laugh at her but you know what? This disease doesn’t discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing’s truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.
As a wonderful neurosurgeon has said “Cushing’s kills.” It just does it at a very slow, painful pace.
MaryO’Note:
This is fantastic, Judy. Thanks for saying it!
I’ve often seen that stupid FB post and haven’t reposted it.
I am both a Cushing’s and a cancer survivor. For me, the cancer was easier to deal with.
I have been dealing with Cushing’s and the after-effects since the early 1980′s.
All I’m left with after my cancer is a scar and some bad memories.
I think Sarah’s death got lots of us thinking. We’ve seen so many unnecessary Cushing’s deaths and it just breaks my heart.
Judy, may I use this as a guest post on my Cushing’s and Cancer blog? It’s perfect!
NIH Cushing’s Clinical Trials
Filed under: adrenal, Clinical trials, Cushings, pituitary, Rare Diseases
| Rank | Status | Study | ||||
|---|---|---|---|---|---|---|
| 1 | Recruiting | Safety and Efficacy of LCI699 in Cushing’s Disease Patients
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| 2 | Recruiting | Preoperative Bexarotene Treatment for Cushing’s Disease
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| 3 | Recruiting | Rosiglitazone in Treating Patients With Newly Diagnosed ACTH-Secreting Pituitary Tumor (Cushing Disease)
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| 4 | Unknown † | Study of Depression, Peptides, and Steroids in Cushing’s Syndrome
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| 5 | Recruiting | Examination of Brain Serotonin Receptors in Patients With Mood Disorders
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| 6 | Recruiting | An Investigation of Pituitary Tumors and Related Hypothalmic Disorders
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| 7 | Recruiting | Prospective, Open-Label, Multicenter, International Study of Mifepristone for Symptomatic Treatment of Cushing’s Syndrome Caused by Ectopic Adrenal Corticotrophin Hormone (ACTH) Secretion
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| 8 | Recruiting | Anesthesia Management of Retroperitoneal Adrenalectomies
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| 9 | Recruiting | Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex
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| 10 | Recruiting | New Imaging Techniques in the Evaluation of Patients With Ectopic Cushing Syndrome
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| 11 | Recruiting | Adolescence, Puberty, and Emotion Regulation
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| 12 | Recruiting | Insulin Sensitivity and Substrate Metabolism in Patients With Cushing’s Syndrome
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| 13 | Recruiting | Study of Adrenal Gland Tumors
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| 14 | Not yet recruiting | Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome
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| 15 | Recruiting | Assessing Fertility Potential in Female Cancer Survivors
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| 16 | Recruiting | Study of Pasireotide in Patients With Rare Tumors of Neuroendocrine Origin
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| 17 | Recruiting | Adrenal Tumors – Pathogenesis and Therapy
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| 18 | Recruiting | Prevalence of Pituitary Incidentaloma in Relatives of Patients With Pituitary Adenoma
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| 19 | Recruiting | Safety and Effectiveness of Granulocyte Transfusions in Resolving Infection in People With Neutropenia (The RING Study)
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Have You Been Helped by Health IT?
Filed under: Cushings, General Health, Health Care, pituitary, Rare Diseases
Do you have a story of how health IT, especially access to data, helped in a case? Improved an outcome, speeded a diagnosis, caught an error, anything?
The National eHealth Coalition is looking for real-world anecdotes, for use (anonymized or not) in their new “NeHC University”:
On June 20th we are hosting NHIN 304 – HIE Success Stories from the Patient Perspective. Our goal for that class is to get some stories from/focusing on patients whose health was improved or whose care was made more effective as a result of health information technology and exchange. …
We are not necessarily looking for patients to speak on the webinar (although that would be great), but we do want to share some patient-centric examples that will emphasize the value proposition of health information exchange from the patient/consumer perspective.
To contribute, write directly to NeHC’s Jenna Bramble at jbramble@nationalehealth.org
Other Diseases
Filed under: adrenal, Cushings, growth hormone, pituitary, Rare Diseases
Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.
~A ~
Acanthosis nigricans
This Topic on the Message Boards.
Acromegaly
This Topic on the Message Boards.
Addison’s Disease
This Topic on the Message Boards.
Adrenoleukodystrophy
This Topic on the Message Boards.
~B ~
~C ~
Carney Complex
This Topic on the Message Boards.
Central Serous Retinopathy
This Topic on the Message Boards.
Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.
Conn’s Syndrome
This Topic on the Message Boards.
Craniopharyngioma
This Topic on the Message Boards.
~D ~
Diabetes insipidus
This Topic on the Message Boards.
~E ~
Ectopic ACTH Syndrome
This Topic on the Message Boards.
Empty Sella
This Topic on the Message Boards.
~F ~
Fibromyalgia
This Topic on the Message Boards.
~G ~
Gigantism
This Topic on the Message Boards.
Growth Hormone (hGH)
This Topic on the Message Boards.
~H ~
Hirsuitism
This Topic on the Message Boards.
Hyperprolactinemia
This Topic on the Message Boards.
Hyperthyroidism
This Topic on the Message Boards.
Hypoalderostonism
This Topic on the Message Boards.
Hypocalcemia
This Topic on the Message Boards
Hypopituitarism
This Topic on the Message Boards.
Hypothyroidism
This Topic on the Message Boards.
~I ~
Insulin Resistance
This Topic on the Message Boards.
~K ~
Kidney Disease
This Topic on the Message Boards.
~L ~
Lyme Disease
This Topic on the Message Boards.
~M ~
Madelung’s Disease
This Topic on the Message Boards.
Menopause
This Topic on the Message Boards.
MEN Type 1
This Topic on the Message Boards.
Myasthenia Gravis
This Topic on the Message Boards.
~N ~
Nelson’s Syndrome
This Topic on the Message Boards.
~O ~
Osteopenia
This Topic on the Message Boards.
Osteoporosis
This Topic on the Message Boards.
~P ~
Panhypopituitarism
This Topic on the Message Boards.
PCOS
This Topic on the Message Boards.
- PCOS: Polycystic Ovary Syndrome
- From Health Talk: Polycystic Ovarian Syndrome
- High Prolactin Levels in PCOS Women
- Low Carbohydrate PCOS Diets: Hype, Hoax or Cure?
- PCOS: Antagon, A New Infertility Drug
- PCOS: Clomid and Infertility
- PCOS Study in Virginia
- PCOS Symptoms
Perimenopause
This Topic on the Message Boards.
Pheochromocytoma
This Topic on the Message Boards.
Pituitary dwarfism
This Topic on the Message Boards.
Premature menopause
This Topic on the Message Boards.
Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards
Prolactinoma
This Topic on the Message Boards.
Pseudo Cushing’s
This Topic on the Message Boards
~R ~
Rathke’s cleft cyst
This Topic on the Message Boards.
ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards
~S ~
Sheehan’s Syndrome
This Topic on the Message Boards.
Stein-Leventhal Syndrome
This Topic on the Message Boards.
~T ~
Thymoma
This Topic on the Message Boards.
Thyroid Gland Disorders
This Topic on the Message Boards.
Turner’s Syndrome
This Topic on the Message Boards.
~V ~
Von Hippel-Lindau disease
This Topic on the Message Boards.
~Z ~
