Category — Patient Advocacy

The Cushing’s Partner Program on meetup.com recently celebrated it’s one year anniversary. We are now 71 members strong (which is amazing considering Cushing’s syndrome effects approx 1 in 500,000), with new members joining every week. Because the Partner Program has been so successful on meetup.com, I extended it to Facebook and we now have 96 members (and still growing every week).

The idea to start the Cushing’s Partner Program stemmed from my desire to create a place for patients and survivors of Cushing’s syndrome to connect in a personal & meaningful way. One of the common threads that most of us feel during our illness and on the road to recovery is isolation. More often than not doctors aren’t familiar with Cushing’s or they’ve never seen an actual case in their practice, so their insights about the challenges of recovery are usually limited and family & friends have a hard time understanding the full impact & long-term ramifications of this disease and we’re left feeling alone to fight an uphill battle.

The Cushing’s Partner Program allows patients in the early stages of diagnosis & recovery to partner with someone who’s farther along in the recovery process (usually about 6+ months post-surgery). Who better to understand all that you’re going through than someone who’s been down that road. And better yet, can give you some insights on what to expect in the coming months of your recovery.

It’s the members who make this group successful - survivors who take the time to reach out to those who are just starting their recovery journey from Cushing’s and those who are strong enough to reach out in search of a connection that will hopefully ease their isolation.

For me, this is not only a celebration of one year passing but a celebration of people coming together to share & support one another in the journey of recovery. Cheers!

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For those of you who live in and around the Virginia area, I wanted to let you know about the Pituitary Days patient conference at the School of Medicine Univ of Virginia on April 16, 2010. To learn more about the conference and to register, please visit the Pituitary Days 2010 Conference home page.

If you live in the area, I would encourage you to attend the conference. It’s a great opportunity to meet other Cushing’s patients and survivors face to face, plus hear from doctors who specialize in this area of medicine.

One of own Cushing’s Partner Program members will be attending the conference. If you’d like to meet up with her at the conference, please send me an email using the contact form and I’d be happy to put you in contact with her.

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I’d like to thank everyone who voted for My Battle With Cushing’s Syndrome during the HealthBloggers People’s Choice Award competition. My blog placed #17 and made the Best 100.

Your support & votes help to bring awareness to a disease that is often overlooked, under-diagnosed and misdiagnosed.

I’d like to wish all of you a happy holiday and cheers to a new year!

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The People’s Choice Health Bloggers competition ends in one week on Dec. 15th - so there’s still time for you to cast your vote for My Battle With Cushing’s Syndrome blog. Each and every vote counts! It only takes a minute (your vote will be counted whether or not you choose to leave a comment). Click here to vote!

For those of you who have voted, thank you for your support!

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I came across an interesting new study published by the Journal of Clinical Endocrinology & Metabolism on Specificity of Screening Tests for Cushing’s Syndrome in an Overweight & Obese Population.

Widespread screening of overweight and obese adults for Cushing’s syndrome is not supported by a new study, even when one or more features of Cushing’s syndrome are present.

“Broad screening programs for Cushing’s syndrome in an obese population would likely lead to unnecessary testing, false-positive results and anxiety,” Dr. Smita K. Baid of the National Institutes of Health, Bethesda, Maryland and colleagues report in the October issue of the Journal of Clinical Endocrinology and Metabolism.

Using tests and criteria recommended by recent Endocrine Society guidelines for screening for Cushing’s syndrome, the research team “found no subject with the disorder among 369 people who were overweight or obese with a mean of five to six signs or symptoms” of the disorder, according to their report.

All subjects completed two or three tests: a 24-hour urine cortisol, and/or late-night salivary cortisol, and/or 1 mg dexamethasone suppression test (DST). An abnormal result on any of these tests triggered a repeat test and/or a dexamethasone-CRH test. Subjects with abnormal DST results and a low dexamethasone level were asked to repeat the test with 2 mg dexamethasone.

The guidelines suggest that Cushing’s syndrome should not be diagnosed unless two tests are abnormal. When the investigators applied this rule, the combined specificities of double combinations of urine free cortisol, DST, and/or salivary cortisol for excluding Cushing’s syndrome ranged from 84% to 90%. The specificity of urine free cortisol, DST and salivary cortisol together was 78%.

While roughly one fourth of the study subjects had at least one abnormal result, mean composite scores among subjects with and without test abnormalities were not significantly different, the investigators report.

This, they say, “highlights the difficulty in determining whom to screen and supports the fact that these screening tests were falsely positive.”

“We caution against a literal interpretation of the recent guidelines,” the authors write. Instead, they suggest that patients be monitored for worsening symptoms over time and then screened, if appropriate.

“Clinical judgment, taking into account the number and progression of symptoms, remains essential for the diagnosis of Cushing’s syndrome,” the researchers conclude.

Report curtosey of NEW YORK (Reuters Health)

I have mixed feelings about this study.  On the one hand, I think a study like this helps to perpetuate an uphill battle many patients face in trying to get a diagnosis of Cushing’s syndrome because doctors think it’s a rare occurrence. And for doctors who’ve had little or no direct experience in diagnosing or treating a patient with Cushing’s, this study (in my opinion) may prevent exploratory testing in patients who truly need it.

On the other hand, as a society we are faced with 2 epidemics - the onset of obesity and the availability of wide spread medical information courtesy of yours truly the Internet. I think obesity & Cushing’s are mutually exclusive and are too often thought of as one in the same - because you are obese doesn’t mean you have Cushing’s and because you have Cushing’s doesn’t necessarily mean you are obese. Yes, being overweight or in some cases obese is a symptom of Cushing’s - but that’s just one symptom. I think there are other far more telling symptoms of Cushing’s besides one’s weight.

The Internet is an amazing tool (it’s hard to think about life before it) and has given us the power to do so many things, such as not taking a back seat to our health care - but rather researching & learning information as it pertains to our well-being. Having access to so much information can at times be a slippery slope because there is a small percentage of people that may have similar symptoms to that of something more serious and they use the information they find online to diagnose themselves or others around them. And all without consulting their doctor.

In my opinion, in a perfect world we’d use the Internet to empower ourselves with information pertaining to our health & body and then present our findings to our doctor to be proactive in getting to the root of what’s going wrong.

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I’d like to thank everyone who has taken a few moments out of their busy schedules to vote for my blog in the HealthBloggers People’s Choice Awards - your comments are touching. It’s because I have the support from all of you that I’m able to have the strength to preserve in my battle with Cushing’s. So thank you.

The competition runs until Dec. 15th - so if you haven’t voted yet, there’s still time!

Kristin Wall http://www.mybattlewithcushings.com

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When: Saturday Nov. 2nd @ 2pm

There are many of us located in the Seattle metro area and it’s about time we get together for a meet & greet. Nothing formal - in fact, I’ll be hosting the get together at my house. Drinks & light refreshments will be provided.

(If you are not currently a member of The Cushing’s Partner Program and would like to learn more about our group or are interested in joining us for our Seattle meet & greet, please register here.)

I have an indoor kitty and stairs - so if this poses an issue for anyone, please let me know and I can arrange for a different location.

I look forward to meeting all of you Seattlelite Cushies! Please RSVP here.

Best,
Kristin

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I’ve decided to extend The Cushing’s Partner Program support group to Facebook! I know many of you are already on Facebook and thought this would be a great way for all of us to connect - plus there’s a large network of Cushies who have yet to find the Partner Program.

If you haven’t already, I would encourage all of you to join us on Facebook - the more members we have, the more people we can help support (including ourselves) in this recovery journey.

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I was recently asked to join the HealthBloggers Wellsphere Network, which promotes bloggers’ work to Wellsphere’s rapidly growing audience, focuses on bringing high-quality blogs to those seeking health information and support online. The network attracts health bloggers –physicians, health professionals, expert patients, caregivers, reporters, and others – with a commitment to increasing visibility to the writers’ work and providing exclusive access to offers, features and tools for their individual blogs.

The HealthBlogger Network is holding its 2nd annual People’s Health Blogger Awards competition and My Battle With Cushing’s Syndrome has been entered and will be featured in at the Heath2.0 conference. Very exciting!

I would love for each and every one of you to show your support for My Battle With Cushing’s Syndrome by voting HERE or clicking on the badge below.

Thank you for your support!

Kristin Wall http://www.mybattlewithcushings.com

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I met with a new doctor last Friday in search for answers and some relief from my never ending recovery from Cushing’s syndrome. I’ll admit, I was a little skeptical when she came into the exam room and asked me to tell her my history with Cushing’s. I had prepared myself for the worst and hoped for the best, so my initial reaction was to ask her if she knew much about Cushing’s. She quickly put my fears to rest and assured me she had extensive experience and knowledge about Cushing’s and endocrine disorders. (mental checklist, CHECK!)

She gave me an overview of how her practice and methods differ from let’s say, traditional medicine. She practices naturpathic and holistic methods of medicine. And went on to explain that a patient needs to be treated as a whole and the goal is to bring the body back into balance naturally. It’s not to say that traditional prescription medicines don’t have a place, but there are often times natural alternatives that achieve the same, if not better results in recovery from certain illnesses and diseases.

She shed light on a new piece of the recovery puzzle that no other doctor has mentioned. When I was sick with Cushing’s syndrome and developed a benign tumor on my right adrenal gland, that was strictly a pathological disease - meaning there was a disruption of normal bodily function due to disease. Once I had surgery to remove the tumor and was cured from Cushing’s syndrome, I no longer suffered from a pathological disease.  Now I’m left with the aftermath  - imbalances - as a result of Cushing’s.  This was the fist time a doctor did not solely rely on numbers from a test. (I’m so tired of hearing ‘You’re tests came back and you’re within the normal range.’ What does normal mean anyway? Because it’s within the normal for the average population doesn’t necessarily mean it’s normal for my body.)

I’m not saying that test results aren’t a valid source of information, but I think patient feedback should be taken into consideration when trying to identify the underlying cause for poor health (and no, it’s not all my head thank you very much!).

So my doctor went on to explain that although I’ve been cured from Cushing’s, there may be issues to address as a result of the exposure to excess amounts of cortisol - such as dysfunctional neurotranmitter(s). ‘Neurotransmitters are the chemicals that allow communication to occur in the brain. Different neurotransmitters allow and/or produce different functions.‘ So if all of my neurotransmitters aren’t functioning at self-sustaining normal levels, that would explain my inability to loose my Cushing’s weight (despite a low-carb diet & exercise), memory lapses and loss of focus to name a couple.

Since this was a meet & greet appointment, my doctor ordered a urine test, along with a 12-hr salivatory test to get a better idea of what the playing field is like (her words, not mine!). Once she gets the results back, we’ll have another appointment to discuss various naturopathic treatments (herbs & supplements) to get my body back in balance.

I was sick with Cushing’s syndrome for more than 4 & 1/2 years and have been in recovery for 16 & 1/2 months now - I AM SO ready to have some balance and to put this thing called Cushing’s behind me.

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