MaryO

Apparently several papers put their own spin on this story. I had collected these 2 versions for the next email newsletters:

http://www.emaxhealth.com/24/8215.html

Google Helping Doctors Diagnose Difficult Cases

Google For A Diagnosis

Searching with Google may help doctors to diagnose difficult cases, finds a study from Australia published on bmj.com today.

Doctors have been estimated to carry two million facts in their heads to help them diagnose illness, but with medical knowledge expanding rapidly, even this may not be enough. Google is the most popular search engine on the world wide web, giving users quick access to more than three billion medical articles.

So, how good is Google in helping doctors diagnose difficult cases?

Doctors at the Princess Alexandra Hospital in Brisbane identified 26 difficult diagnostic cases published in the New England Journal of Medicine in 2005. They included conditions such as Cushing's syndrome and Creutzfeldt-Jakob disease.

They selected three to five search terms from each case and did a Google search while blind to the correct diagnoses.

They then selected and recorded the three diagnoses that were ranked most prominently and seemed to fit the symptoms and signs, and compared the results with the correct diagnoses as published in the journal.

Google searches found the correct diagnosis in 15 (58%) of cases.

The authors suggest that Google is likely to be a useful aid for conditions with unique symptoms and signs that can easily be used as search terms.

However, they stress that the efficiency of the search and the usefulness of the retrieved information depend on the searchers' knowledge base.

Doctors and patients are increasingly using the internet to search for health related information, and useful information on even the rarest medical syndromes can now be found and digested within a matter of minutes, say the authors.

"Our study suggests that in difficult diagnostic cases, it is often useful to google for a diagnosis."

~~~~~~~~~~~~~~~~~~~~~~~~~~~

http://www.abc.net.au/news/newsitems/200611/s1785466.htm

Doctors use Google to diagnose disease: study

By Anna Salleh, ABC Science Online

It is not just patients who are frantically plugging their symptoms into Google to see what disease they might have, Australian researchers say doctors are doing it too.

Dr Hangwi Tang and Dr Jennifer Ng of the Princess Alexandra Hospital in Brisbane have reported their findings online in the British Medical Journal.

Dr Tang says the study was driven by personal curiosity after noticing how patients and doctors alike were using Google to diagnose difficult cases.

In one example he had a patient whose father used the search engine to correctly diagnose that his son had the rare circulatory condition -Paget-von Schr?tter syndrome.

Dr Tang and Dr Ng selected 26 difficult cases presented in the New England Journal of Medicine, including Cushing's syndrome, Creutzfeldt-Jakob disease, encephalitis and cirrhosis.

They then plugged the symptoms of each case into the search engine to come up with a diagnosis.

When these diagnoses were compared with the correct published diagnoses, the researchers found that Google got it right 58 per cent of the time.

They say an online search is likely to be more effective at helping to diagnose conditions with unique symptoms that can be used as search terms.

Dr Tang says part of the challenge in using Google is to be able to efficiently sift through the many pages of links that you get from an online search.

He thinks that doctors are better placed than patients at doing this because they are better at selecting relevant links.

"I don't think Google can replace doctors, in other words," said Dr Tang.

Millions of facts

Doctors have been estimated to carry 2 million facts in their heads to help them to diagnose disease, the researchers say.

But search engines allow them to get quick access to an ever increasing medical knowledge base that might be impossible to hold in their head.

Google in particular gives access to more than 3 billion articles, they say, with Google Scholar restricting searches to peer reviewed articles.

Dr Tang says while there are a number of other search engines that clinicians can use, they often prefer Google because it is so easy to use and freely available.

Other studies

Professor Johanna Westbrook of the Centre for Health Informatics in Sydney says the findings are consistent with her own.

Her team looked at how specialised search engines could help clinicians to both diagnose and treat patients, using the best available evidence.

The study found clinicians were 21 per cent more likely to give the correct answers when they used online search engines.

Interestingly though, a few clinicians got the wrong answers using the search engines, although they got the right answers without them.

Professor Westbrook says this underscores the importance of learning how to interpret complex evidence.

Another interesting finding was that clinical nurse consultants using the search engines were just as accurate as doctors.

Professor Westbrook says this suggests search engines might help such nurses to diagnose and treat patients in rural areas where there are fewer doctors.

"[An online search engine is] available 24 hours a day," she said.

"Whereas you can't get a clinician 24 hours a day. You can't get to a hospital library 24 hours a day."

Professor Westbrook says that while Google might be good for helping find information about diseases with unique symptoms, more sophisticated search engines would be required for more complex diseases.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thanks, Robin!

From http://www.newswire.ca/en/releases/archive...6/23/c3257.html

Hormone resistance of pituitary tumors and Cushing disease explained

MONTREAL, Oct. 23 /CNW Telbec/ - Montr?al scientists led by Dr Jacques

Drouin, researcher at the Institut de recherches cliniques de Montr?al (IRCM),

and collaborators from around the world (Canada, France, the Netherlands and

United States) unravel mechanism of hormone resistance in pituitary tumors of

Cushing disease patients.

Cushing disease is caused by pituitary tumors that produce excessive

amounts of hormone because the tumor cells have become resistant to negative

feedback control by a class of steroid hormones, glucocorticoids. In Cushing

disease, this excessive hormone production can lead to hypertension, obesity,

diabetes and osteoporosis. Through detailed molecular investigation of the

mechanism of this negative feedback, a Montr?al research group has identified

two essential components (proteins) of this feedback mechanism. Extrapolating

from these basic studies, they have shown that about half of the pituitary

tumors from Cushing disease patients are deficient in expression of either of

these proteins, thus providing a molecular explanation for the hormone

resistance that is the hallmark, and likely first event, in the formation of

these tumors. The novel insight provided by knowledge of the basic mechanism

of hormone resistance will lead to the rational design of therapeutic

approaches for the better management of Cushing disease patients. This insight

will also help understand other forms of hormone resistant cancers.

This work is published in Genes and Development (Bilodeau et al, Genes

Dev 2006, 20:2871- 2886) and it was supported by grants from the Canadian

Cancer Society and from the Canadian Institutes of Health Research.

Dr. Jacques Drouin is the Director of the Molecular Genetics Research

Unit at IRCM. He holds the GlaxoSmithKline Chair in Molecular Genetics.

The IRCM (www.ircm.qc.ca) is recognized as one of the country's

top-performing research centres. It has a mandate to establish links between

research and patients, promote the prevention of illness, and train a new

generation of high-level scientists. The IRCM has 37 research units and a

staff of more than 450. The IRCM is also affiliated to Universit? de Montr?al.

For further information: Lucette Th?riault, Communications Director,

Institut de recherches cliniques de Montr?al, (514) 987-5535,

lucette.theriault@ircm.qc.ca

From http://jcem.endojournals.org/cgi/content/abstract/91/10/3746

Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2006-0997

The Journal of Clinical Endocrinology & Metabolism Vol. 91, No. 10 3746-3753

Copyright ? 2006 by The Endocrine Society

CLINICAL REVIEW

Cushing?s Syndrome: Important Issues in Diagnosis and Management

James W. Findling and Hershel Raff

Endocrine-Diabetes Center (J.W.F.) and Endocrine Research Laboratory (H.R.), St. Luke?s Medical Center, Milwaukee, Wisconsin 53215; and Department of Medicine (J.W.F., H.R.), Medical College of Wisconsin, Milwaukee, Wisconsin 53226

Address all correspondence and requests for reprints to: Hershel Raff, Ph.D., Endocrinology, St. Luke?s Physician?s Office Building, 2801 West KK River Parkway, Suite 245, Milwaukee, Wisconsin 53215. E-mail: hraff@mcw.edu.

Context: The diagnosis, differential diagnosis, and treatment of Cushing?s syndrome are challenging problems in clinical endocrinology. We focus on critical questions addressing screening for Cushing?s syndrome, differentiation of Cushing?s subtypes, and treatment options.

Evidence Acquisition: Ovid?s MEDLINE (1996 through April 2006) was used to search the general literature. We also relied on previously published reviews and a recent monograph and cite a mix of primary articles and recent reviews.

Evidence Synthesis: Although this article represents our opinion, it draws heavily on a recent consensus statement from experts in the field and a recent monograph on Cushing?s syndrome.

Conclusions: We concluded that:

1) measurement of late-night or bedtime salivary cortisol is a useful approach to screen for Cushing?s syndrome;

2) measurement of suppressed plasma ACTH by immunometric assay is useful to differentiate ACTH-dependent and -independent Cushing?s syndrome;

3) inferior petrosal sinus sampling for ACTH should be performed in patients with ACTH-dependent hypercortisolism in whom a pituitary magnetic resonance imaging is normal or equivocal (in the absence of a pituitary ACTH gradient, prolactin levels should be measured to confirm the integrity of venous sampling);

4) computed tomography of the chest and abdomen and somatostatin receptor scintigraphy should be performed in patients with the occult ectopic ACTH syndrome; and

5) patients with Cushing?s disease should be referred to a neurosurgeon with extensive experience operating on corticotroph microadenomas. Bilateral laparoscopic adrenalectomy should be considered in patients with Cushing?s disease who fail therapies directed at the pituitary.

Meri posted this article here: http://cushings.invisionzone.com/index.php...mp;#entry152353

Thanks, Meri!

http://www.wqad.com/Global/story.asp?S=5435645&nav=7k8p

Obese from Secret Disease

Imagine exercising everyday, eating very little and still gaining weight.

That's what happens to hundreds of people with a rare metabolic disorder that often goes undiagnosed for years.

There is hope and help.

Obese from Secret Disease

As a young teen, Jaimie Augustine weighed 130 pounds. She started gaining weight at 15. At 22 she weighed 220.

"I was at the gym every day for an hour and a half; I was consuming 1,000 calories or less a day," says Jaimie.

Jaimie also had insomnia, excess hair growth, severe acne, depression and stopped menstruating. But it took five years before she found a doctor who recognized the symptoms of this mystery disease.

"I felt validation because I had friends and family that didn't believe me. They're just thinking, 'Oh, you're sneaking Oreos at night,'" she says.

Jaimie was diagnosed with Cushing's disease.

"Virtually all the symptoms and physical features of Cushing's can be associated with other diseases -- and diseases that are more common than Cushing's," says Dr. William Ludlam, and endocrinologist at Oregon Health and Science University in Portland, Oregon.

It's caused by a tumor in the pituitary gland that imbalances your hormones. Glands on the kidneys then release too much of the hormone cortisol.

"So despite what you do, your metabolism has been hijacked by too much of a hormone that you actually need to live," says Dr. Ludlam.

Surgery like this can remove the tumor -- with the greatest chance for a cure in the hands of an experienced neurosurgeon. Jaimie's first surgery didn't work, so last fall she had a second procedure. It worked. She's already lost 40 pounds.

"Now I have my life back," says Jaimie.

And she has a future she can look forward to instead of dread.

No one knows exactly how many people have cushing's disease because it often goes undiagnosed.

But about one-thousand people are told they have it each year in the U.S.

The first step in diagnosing it is to find an experienced endocrinologist -- the diagnosis can then be confirmed through blood and urine tests.

Some centers also treat it through drugs and radiation.

Log on to www.ivanhoe.com for more information.

Watch the latest Medical Breakthrough every Monday, Wednesday and Friday on NewsChannel 8 at 5 and every Monday and Wednesday on NewsChannel 8 at 10.

From http://jcem.endojournals.org/cgi/content/abstract/91/7/2656

Surgical Remission of Pituitary Adenomas Confined to the Neurohypophysis in Cushing?s Disease

Robert J. Weil, Alexander O. Vortmeyer, Lynnette K. Nieman ( http://www.cushings-help.com/doctors-md.htm#nieman ), Hetty L. DeVroom, John Wanebo and Edward H. Oldfield ( http://www.cushings-help.com/doctors-md.htm#oldfield )

Surgical Neurology Branch (R.J.W., A.O.V., H.L.D., J.W., E.H.O.), National Institutes of Neurological Disorders and Stroke, National Institutes of Health, and Reproductive Medicine and Biology Branch (L.K.N.), National Institute of Child Health and Development, National Institutes of Health, Bethesda, Maryland 20892-1414

Address all correspondence and requests for reprints to:

Edward H. Oldfield, M.D.,

Surgical Neurology Branch,

National Institutes of Neurological Disorders and Stroke,

National Institutes of Health,

Building 10, Room 5D37, MSC 1414,

9000 Rockville Pike,

Bethesda, Maryland 20892-1414

E-mail: mailto: oldfiele@ninds.nih.gov

Context: Partial or total removal of the pituitary cures 60?80% of patients with Cushing?s disease (CD) in whom an adenoma cannot be identified at surgery. Many patients who fail complete or partial hypophysectomy are cured by sellar and parasellar irradiation.

Design/Patients: As part of a series of prospective studies of CD, we identified 12 patients (34.5 ? 19.9 yr; 11 females; four children) with tumors located completely within the neurohypophysis among 730 patients undergoing surgery for CD.

Setting: The study was conducted at a tertiary referral centerat a clinical research hospital.

Results: All 12 patients had clinical and biochemically defined CD. Tumor was visible at surgery in 11 patients; all 12 tumors were positive for ACTH by immunohistochemistry. Two tumors were excised at repeat surgery because of persistent hypercortisolism within 14 d of negative exploration of the adenohypophysis. There were no long-term complications. At follow-up of 71.9? 34.2 months (range, 30?138 months), all patients are in remission of CD. Adult patients have had significant improvement in weight and body mass indices, with restoration of normal menses in all women. In the four pediatric patients, height, weight, and body mass indices have been restored toward normal by surgical remission of CD. Hypopituitarism or long-term neurohypophysial dysfunction has not occurred.

Conclusion: We report a new subset of patients with CD, ACTH-secreting adenomas that arise wholly within the posterior lobe of the pituitary gland. In cases of CD in which an adenoma is not identified in the adenohypophysis and in patients with persistent hypercortisolism after complete or partial excision of the anterior lobe, tumor within the neurohypophysis should be considered; selective adenomectomy of a neurohypophyseal, ACTH-secreting tumor can produce long-term remission.

From http://jcem.endojournals.org/cgi/content/abstract/91/7/2582

Comparison of the Dexamethasone-Suppressed Corticotropin-Releasing Hormone Test and Low-Dose Dexamethasone Suppression Test in the Diagnosis of Cushing?s Syndrome

N. M. Martin, W. S. Dhillo, A. Banerjee, A. Abdulali, C. N. Jayasena, M. Donaldson, J. F. Todd and K. Meeran

Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom

Address all correspondence and requests for reprints to: Dr. K. Meeran, Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom. E-mail: k.meeran@imperial.ac.uk

Context:

The low-dose dexamethasone suppression test (LDDST) is widely used in confirming a diagnosis of Cushing?s syndrome. CRH administration at the end of an LDDST has been reported to improve the diagnostic accuracy of this test.

Objective:

Our objective was to assess whether CRH administration after a standard LDDST (LDDST-CRH test) improves diagnostic accuracy in Cushing?s syndrome.

Design, Setting, and Participants:

Thirty-six individuals with a clinical suspicion of Cushing?s syndrome each completed a standard LDDST and an LDDST-CRH test at Hammersmith Hospitals NHS Trust, London. The LDDST involved administration of 0.5 mg oral dexamethasone given 6-hourly for 48 h. Serum cortisol was measured 6 h after the last dose of dexamethasone, with a value of 50 nmol/liter or below excluding Cushing?s syndrome. Immediately after this, the LDDST-CRH test commenced with administration of a ninth dose of 0.5 mg dexamethasone. Exactly 2 h later, 100 ?g human-sequence CRH was administered. Serum cortisol was measured 15 min after the CRH injection, with a value of less than 38 nmol/liter also excluding Cushing?s syndrome.

Main Outcome Measure:

Diagnosis or exclusion of Cushing?s syndrome was the main outcome measure.

Results: Twelve subjects were diagnosed with Cushing?s syndrome (eight Cushing?s disease and four primary adrenal). The sensitivity of the LDDST in diagnosing Cushing?s syndrome was 100%, with a specificity of 88%. In contrast, although the sensitivity of the LDDST-CRH test was also 100%, specificity was reduced at 67%. These results give a positive predictive value of 80% for the LDDST and 60% for the LDDST-CRH test.

Conclusion: This small study suggests that the addition of CRH to the LDDST does not improve the diagnostic accuracy of the standard LDDST in Cushing?s syndrome.

Get the full text from this link: http://jcem.endojournals.org/cgi/content/abstract/91/7/2582

http://www.oregonlive.com/living/oregonian...1020.xml&coll=7

A diagnosis to end the despair

Wellness: Finally learning they have Cushing's brings a sense of relief

Wednesday, July 05, 2006

KATE TAYLOR

The Oregonian

They've spent years, they say, chasing misdiagnoses. "You eat too much pizza," said some doctors. "It's fibromyalgia," said others. "Lupus, thyroid disorder, menopause," said still more doctors.

It was only when they found Dr. William Ludlam at Oregon Health & Science University that they were diagnosed with Cushing's disease, which causes uncontrollable weight gain. And it wasn't until they found each other that they felt anyone else really understood their frustration and despair.

"I tear up just thinking about how complete and validated I felt when I met them. We're like family now," said Jaimie Augustine, 22, of San Diego, sitting recently in a hospital room with Ludlam and two other Cushing's patients, Karen Nolan of Vermont and Lisa Eldridge of Massachusetts.

Reaching a hand toward Nolan, Augustine said, "I call her 'Karen, my Cushy mom.' She understands things that I can't even talk to my own mother about."

Like the nightmare of turning into someone she didn't recognize in the mirror. Or the strict dieting and strenuous exercise that did nothing to stop the weight gain. Or the helpless anger at so many fruitless medical appointments.

As director of the OHSU Pituitary Unit, one of the largest neuroendocrine centers in the country, Ludlam says he's glad to see Cushing's patients bonding. He is working hard to diagnose and spread awareness about the rare disease, which is caused by a tumor in the brain's pituitary gland.

Ludlam guides about 30 patients a year through surgery. Because it's difficult for surgeons to siphon the pituitary tumor -- "it's like a puddle," he says -- patients sometimes have to go through surgery more than once.

Only 600 patients nationwide are diagnosed each year with the disease, but doctors like Ludlam suspect that many others go undiagnosed.

Besides wild weight gain, symptoms of Cushing's include rounded, puffy facial features, increased fat around the neck, fragile and ruddy skin, unusual hair growth and thinning or balding scalps.

They are symptoms that the three friends say they fought for years.

As Augustine's weight rocketed from 120 to 220 after she turned 14, she went on low-calorie diets and upped her workouts to 11/2 hours a day. When she continued to expand, she stopped dating and taking part in social activities.

"I was continuing to balloon into a person I no longer recognized," she said. "I knew something was seriously wrong, and I could not keep beating myself up over what I was or wasn't putting in my mouth."

The friends found each other by entering phrases such as "uncontrollable weight gain" on their computer search engines, they said.

On Cushings-help.com -- a Web site the three describe as "lifesaving" -- they found one another. As they read each other's stories, waves of relief washed over them. "I really thought," Augustine said, "that I was the only one."

Many doctors, Ludlam said, don't have the expertise to recognize Cushing's.

"There are two issues. One is that the general practitioner doesn't see the disease very often and won't think of it when a person has it right there in front of them," he said. "The other problem is that it's complex, so a doctor might not give the diagnosis because one piece of the work-up doesn't fit."

One of the most problematic aspects of Cushing's, Ludlam said, is that it drains away patients' energy even as they try to seek help.

For Nolan, 55, Cushing's came with a weakness and shakiness that made even a trip up the stairs or a short drive to the store dicey.

"The fatigue was odd," she said. "I'd be driving and suddenly have to open up all the windows because I was afraid I was going to fall asleep."

The onset of Nolan's disease began sometime in 1999, when her weight shot from 128 to 206 and she lost nearly all her hair. As doctors guessed everything from menopause to depression, the former office manager grew ever larger, ever more frightened.

"The darkest moment was when one doctor told me I'd better just get used to being heavy and bald," she said. "I remember driving home and crying the whole way."

Nolan, who had surgery in January, is anticipating the kind of weight loss experienced by her "Cushing's family." Augustine, whose surgery was in November 2005, has lost 20 pounds; Eldridge's surgery was in April 2005, and she has lost 50 pounds.

As more and more people are diagnosed, the three patients are working to help spread awareness about Cushing's. And, they say, they hope to be able to support many other patients who have to go through the same ordeal.

"You can't believe how much it helps to have friends," Augustine said. "When one of us can't see the light at the end of the tunnel, the others can help us get through."

Kate Taylor: 503-294-5116; katetaylor@news.oregonian.com

I can also add them to those that are at http://www.cushings-help.com/links.htm if you think that would be helpful.

Dr. Vance always says that it's not a brain tumor. Her answer to Is a pituitary tumor a brain tumor?

The pituitary gland is NOT in the brain and pituitary tissue is different from brain tissue. Since the pituitary gland is located at the base of the brain and is connected to the brain by a thin stalk, there is often confusion, particularly by insurance companies, about the classification of a pituitary tumor. A pituitary tumor is NOT a brain tumor.

However, when I'm talking to almost anyone I will tell them I had a brain tumor. Everyone knows where the brain is and too few know where the pituitary is.

If I have more time, I'll give them the full works so they know for sure where the pituitary is

I wouldn't think so, since a pituitary tumor is not a brain tumor.

On the other hand... if so many doctors have trouble with this stuff, a cartoonist might make the same mistakes they do (unless he comes here! LOLOL).

Rex Morgan is still going??? I remember that from my childhood, about a century ago

Someone sent me these in my email...

Here is a link to an article in the Journal of Traditional Chinese Medicine, but you have to pay for it. 

 

http://www.jcm.co.uk/product.php?catID=247...&productID=7291

 

Shen's Experience in Application of the Drugs For Tonifying the Kidney to Reduce and Withdraw Adrenocortical Hormone

JTCM Sept 2001 68/54

\Wang Xingjuan

 

 

http://www.rmhiherbal.org/hscc/index.html

 

A Review of TCM Management: Steroid Syndrome 19pp.; ?1993;  $18

---Differential pattern assessment (primarily of Deficiency of Kidney Yin and/or Yang); steroid resistance and dependency; methods of alleviating the side-effects of steroid therapy.

---Illustrative clinical cases.

---Herbal strategies and formulas for the various manifestations of Cushing's syndrome.

Coming March 3rd, new Awareness Bands. These are going to be the light Blue color still with the debossed text in yellow.

The text will read (those are little hearts on the side): ♥ Cushing's Awareness ♥

It's About Time!

I have ordered 60 Medium, 20 Large and 20 Child. Tomorrow, I expect to put up a pre-order form which, as before, will be cheaper than they will be after they arrive.

They think that the adrenal glands are in the brain! "A tumor in the adrenal gland of Kyle's brain..."

http://www.fortmorgantimes.com/Stories/0,1...3213158,00.html

Article Last Updated: Tuesday, January 24, 2006 - 5:30:39 PM MST

Morgan boy, 11, wins battle after close brush with death

By CAMERON MATHEWS

Times Staff Writer

When Kyle Hopkins, an 11-year-old Fort Morgan boy, complained to his mother, Angela, of having a headache, his symptom quickly spiraled into a violent swarm of events that would change his and his family's life forever.

The Hopkins family was spending the day together at Flatirons Mall June 4, 2005, when Kyle told his mother he was having sharp pains in his head. After a light lunch of Chinese noodle bowls and soft drinks -- an unusually light lunch for a big eater like Kyle who ate barely any of his food -- the family decided to walk around a bit more before heading back to Fort Morgan.

As the strong scent of perfume seeped out of one of the stores, it was the triggering effect that somehow skyrocketed Kyle's headache into a world none of them thought existed. As Angela rushed off the escalator to grab some Aleve for her son, Kyle began to cry. As he took two steps off the escalator, the crying turned to screaming.

A seizure in Kyle's brain caused him to collapse and instantly paralyzed the entire right side of his body. He began to throw up as the Flatirons Mall security quickly called 911 for further assistance. A North Metro Fire and Rescue ambulance arrived at the scene shortly after to pick up Kyle, and he was rushed to Avista Hospital right across the street from the mall.

Looking back, Angela knew the hospital's close location was the reason Kyle survived. The headache he felt turned out to be a hemorrhagic stroke caused by hypertension. Too much pressure on Kyle's brain from the hypertension caused several arteries to blow, which led to the stroke.

"He was a perfectly healthy boy like every other boy," Angela said. "Doctors told us he is an absolute miracle. The hospital that saw him is the only reason he is still here today."

Just 45 minutes after Kyle's stroke, neurosurgeons were performing brain surgery on him to do an emergency pressure release operation on his head. A tumor in the adrenal gland of Kyle's brain had caused the pressure overload, and the surgeons had to work quickly as he was losing blood fast.

Surgeons cut off a large piece on the left side of Kyle's skull in order to perform the surgery. Kyle was in a coma at that point and would stay that way for the next two months.

He was on life support for many days as his body became stronger, and his brain came back to having normal neurological patterns. Once the swelling in his brain subsided, the spinal chord fluid tube was removed. He was also tube fed through his mouth for two months while he remained in a coma. He was finally released from the hospital on Aug. 29.

Kyle remained in the hospital for nearly three months before he was released. While Kyle's dad, Thomas, came down to see him in the hospital every week, Angela stayed with Kyle the entire three months of his recovery. Doctors had placed a bed beside Kyle's bed for her to sleep on.

He even celebrated his 11th birthday in the hospital. One thing Kyle will not miss was the number of needles that had to be put into his body during his time in the hospital. Angela said he was never afraid to get shots or to have blood drawn before the stroke, but if Kyle so much as sees a needle now, he screams.

Because of Kyle's stroke, he not only had to learn to walk all over again, but had to re-learn to talk as well. His short-term memory was lost, and the right side of his body, specifically his right shoulder and leg, are still paralyzed. Doctors still don't know what caused the stroke, but they do know he is lucky to be alive today, Angela said.

It was extremely tough for Angela and Thomas to realize Kyle's dreams of becoming an all-star baseball player and starting football halfback icon, but Kyle is intent on getting better and maybe following through with those dreams at a later time.

From September to October of 2005, Kyle went though physical therapy treatment where he currently attends school at the Abner S Baker Central School, 300 Lake St. He stopped doing his therapy at the school shortly after that, but his mother said he is non-stop active when he does therapy at his home.

He practices walking, squatting and bending every day. Kyle still uses the aid of a cain when he walks. Angela and Kyle run through several exercises to get his body working and adrenaline running. Kyle loves walking on the treadmill and even does inclined sit-up's until his stomach burns.

The biggest challenge for Kyle's family has been rebuilding his memory. He knows the answers to many of the questions his family asks him, but sometimes the words can't come out.

"It was almost like he lost his entire vocabulary," Angela said. "We have had to re-train his brain to work and remember things again. We have to teach him everything he used to know."

Because of his stroke, Kyle is also legally blind in his right eye. The right side of his body received the most damage due to the stroke taking place on the left side of his brain. The optic nerve above his right eye was so close to his brain that the stroke impaired the vision there and peripheral vision in either eye is also gone.

While Kyle might have successfully and heroically overcome the stroke, Angela said he is also more susceptible for another stroke in the future. Even that won't keep the family from forcing a smile and living life as it presents itself every day. The Hopkinses were given someone beautiful: their son.

"Kyle still loves going to school, and he wakes up every day with a smile," Angela said. "He will never quit."

Angela described the stroke as a silent killer because by the time you figure out what is happening, many times a person will already be dead. Kyle's 8-year-old brother, Mason, thought his brother had died after the stroke.

"I think we have come to better understand how fast you can lose someone you love," Thomas said. "This was a life-changing event for all of us."

The support through many of the Hopkinses' friends helped them pull though the event a little more easily. Angela said one of Kyle's friends, a boy named Justin, came to see him in the hospital all the time.

Justin would sit with Kyle, hug him and talk to him; keep him in good company. When a doctor asked if Justin was Kyle's brother, he said with tears in his eyes, no, but he wished he could be. He would give anything to be his brother.

Kyle's situation was so rare, Angela explained, but the problem was meant to be found.

"We want everyone else to know that as healthy as children can be, things can happen in a split second," Thomas said. "If a child has a headache or a loss of vision or a stomach ache, don't take any of those situations for granted. You never know if something like this could happen to your own child."

Angela and Thomas know Kyle is supposed to be in this life for a reason, and they just have to figure out what that reason is. Through Kyle's fight, will, determination and love, he was able to pull though his struggle with death. He is a miracle child and all his dreams are still with him at the end of the day, Angela said.

"He still wants to be a normal boy," she said. "He wants to be the boy he used to be."

{SECTION}-- Contact Cameron Mathews at business@fmtimes.com .

One of our early members, Janice, died on Tuesday 9/4/2001. She was the first person that I knew of on the message boards who had ever passed away and it was so sad. Janice's family wore Cushing's awareness ribbons at her funeral. They chose the blue and yellow colors of the website and message boards.

Later on, when the first CUSH pins were designed, they were copied from Janice's Cushing's awareness ribbons but it was easier to get half one color and half the other instead of both colors on each side.

Will the stamps be avaiable when the price of stamps change in January and will they reflect the new price change?? I believe stamps will be going up to 39 cents.

I finally checked on this. The answer is:

"Postage Rates increase & Custom Postage

Effective January 8th, postal rates will be increasing. The postage rates for Custom Postage will be updated January 5th. The base price will increase based on the postage rate increase."

And there are stamps in other denominations besides the new (starting Sunday) 39 cent stamps. There are also 6 other denominations available. Even though it said that these rates would be udated yesterday, I don't see that it's been done yet.

from http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=305108&in_page_id=1774

Parents risk harming their children because of misinformation about the best treatments for eczema, experts said today.

While some parents turn to herbal lotions of unknown quality to treat their youngsters' skin, others are shunning prescribed steroid creams because of misconceptions about the side effects, a meeting of dermatologists was told.

Dr Sue Lewis-Jones, a specialist in paediatric dermatology from Dundee, said a network of nurses focusing on the management of childhood eczema and other skin problems was urgently needed.

She said that a lack of money and focus on the speciality was to blame for the small number of nurses working in this area.

"These nurses can help parents manage their children's condition, keep an eye on their progress and lead to fewer admissions to hospital."But there is no money for it.

"It is an obvious thing to do and it would ultimately save the NHS money," Dr Lewis-Jones said.

The consultant dermatologist, speaking at the British Skin Foundation meeting in central London, also highlighted concerns about parents opting for herbal Chinese remedies to treat their children.

She said there were examples of companies springing up promising "wonder cures" for eczema and psoriasis.

"There are lots of reputable companies and there is no reason why some remedies shouldn't work because most medicines originally came from plants.

"But the problem is that we don't know what part of the plant is having the effect and there is less known about the side effects."With modern medicines much more is known about the side effects.

"Some people out there just want to make money and will dishonestly promote small pots of cream that cost £30 each," Dr Lewis-Jones said.She said that these creams often contained hidden steroids which produced the desired effect and led patients to believe the treatments were working.

But this led to the danger that young children could be exposed to very strong steroids normally only given to adults.

Dr Lewis-Jones said she knew of a case where a parent had used a very strong steroid called Dermovate which was bought from Hong Kong to treat her 12-year-old's psoriasis.

Although the product was clearly labelled, the mother used the cream on her child for 18 months without knowing the dangers of such heavy steroid use.

The girl went on to develop Cushing's Syndrome which leads to weight gain, thinning of the bones and blood pressure problems and is caused by too many steroids.

The condition can cause patients to collapse and die and the child had spent three weeks in hospital while she was treated.But Dr Lewis-Jones said under-treatment was a much more serious concern for children with skin conditions.

She said research had shown that three-quarters of parents were worried about using steroid creams on their children and a quarter stopped using them all together.

They were apparently concerned about products would thinning the skin with some even believing they would lead to muscle development such as that seen in bodybuilders who abuse steroids."The thing about eczema is that we can get it under control and are not going to have to use steroids for very long.

"There is also widespread ignorance of the public and health professionals about the use of steroids but they are a life-saver for people with eczema," Dr Lewis Jones said.

One in three-children under the age of three-and-a-half suffers from eczema. Psoriasis is also very common, affecting 1.2 million people in the UK.

Dr Colin Holden, trustee of the British Skin Foundation, said: "The number of people suffering from skin disease is increasing every day."It's vital we keep investing money in life-changing research."

Yes, Cathy, that's right. They're actually from stamps.com. Stamps.com started making photo stamps ( http://photo.stamps.com ) and Cafepress, as I understand it, got stamps.com to allow the cafepress members (including us Cushies) to be able to use images instead of just photos. So, that was where I came in with the image for the stamp.

They are available now, if anyone is interested. If anyone wants, they can look into the process of getting official USPS-issued stamps, but I'm sure that there's a ton of paperwork and time involved in that project.

From http://photo.stamps.com/PhotoStamps/learn-more/real/ :

Yes, PhotoStamps from Stamps.com are valid U.S. Postage, based on a technology called PC Postage, which is what creates the bar code you see to the right of the image area on PhotoStamps. Only vendors that are licensed and approved to produce PC Postage may display the logo seen below:

 

 

 

Stamps.com, the company behind PhotoStamps, has been a USPS-approved provider of PC postage since 1999, and is the industry leader. When the product first launched in 2004, PhotoStamps by Stamps.com was the first customized postage product ever to be offered in the United States.

 

After the successful market test during 2004 in which over 2.75 million PhotoStamps were sold in just 7 ? weeks, PhotoStamps from Stamps.com returned in May 2005 under authorization of the US Postal Service. In the first 6 weeks following the return of PhotoStamps in May 2005, an additional 1.4 million PhotoStamps have been sold. That is over 4 million letters, greeting cards, invitations and gifts that have already been made more exciting by using PhotoStamps!

 

Always look for the licensed approved vendor logo shown above, or look for the "PhotoStamps?" (single word) brand before you purchase any customized postage product anywhere on the Internet. When you see the logo above or you see the PhotoStamps trademark, you can be assured that the U.S. Postal Service will accept your mail and process it without delay. Be careful because there are many imitators out there that are nothing more than photo stickers! PhotoStamps from Stamps.com is the original customized postage product and is always genuine U.S. Postage.

I'm going on vacation August 20, so there will be no deliveries of wristbands between August 20 and September 6. Of course, you can still order, but they won't be shipped until I get home.

Also, there are only 5 left of the yellow large, and 6 of the small blue bands. I don't think I'll be ordering any more, so if you want these, act quickly

Should I ever place another order for these, they would probably be blue large and medium.

Well, I have no idea who worked on it from the stamps.com side, but I'm the one who did the Cushing's version.

So... you're welcome

These will be in the regular Cushing's Store. $2.00 of each purchase will go the the running of these boards and the rest of the websites.

The stamps will come in sheets of 20. This Custom Postage cannot be purchased or shipped outside the U.S.

Here are the size ranges:

Apparel

Fitted T-shirt - Made in U.S.A.

Organic T-shirt

Women's Junior Apparel

Jr. Ringer T-Shirt, Jr. Baby Doll T-shirt, Jr. Spaghetti Tank, Jr. Raglan, Jr. Hoodie and Camisole

This item fits snug and sizes run small. Order a larger size for a looser fit.

Sizing is always controversial when it comes to women's T's. Classic Girl by American Apparel is not a "junior's" line. It is designed for women of all ages who desire a youthful fit. Because their fabrics are stretchy (especially their Baby Rib, which has a stretch factor of over 100%), each size can fit a wide range of women.

* Not available in all styles

Erin, I'm not sure what size you need, but the white shirts come in this range: Available Sizes: KS, KM, KL, S, M, L, XL, 2XL, 3XL, 4XL

Yellow Available Sizes: S, M, L, XL, 2XL

Ash grey Available Sizes: S, M, L, XL, 2XL, 3XL

Green (we don't have any shirts in this color, but they could be made if anyone is interested) Available Sizes: M, L, XL, 2XL

Pink (we don't have any shirts in this color, but they could be made if anyone is interested) Available Sizes: S, M, L, XL, 2XL

If you wanted, say, a white shirt but wanted a saying that's not on the white shirts, let me know, and I can have that changed

I'm not quite sure to post this, so it will probably be in a couple different places

I want to thank the people who generously contributed so that NIH visitors could get Cushie wrist bands. I delivered the first of them last week to Myra B, Lisa J and to the chaplain on the floor. He came in while I was waiting for Myra, was new to NIH and new to Cushing's. I figured he could learn a lot from the included pamphlets and maybe understand his patients a little better as he talks with them each day.

I also left a "package" with Myra to give to another Cushie on their floor who I hadn't met but both Lisa and Myra knew.

So, I distributed the first 4 of the Cushie bands...so far, and I thank you for your generosity in doing this for them.

In addition to the awareness bands, each bag includes a CUSH brochure, my own brochure (the same as I send out with the regular awareness bands), and a Cushings-Help business card.

Each of my brochures was edited to include the name of the person who donated the bands, so that the patients will know that there's another patient out there who did this for them.

Thanks again - you made several Cushies smile last week!

Aemi, it's great to see you! How are you doing?

I have decided to stick with the blue and yellow ones. It's confusing enough with all the different sizes. Unfortunately, to get a 2 color band like that would cost a LOT more money. I'm just wearing one of each color and that works for me!

Kathi, the yellow ones can ship out Tuesday by 2-day priority mail so they'd get there by Friday (hopefully!) at the latest.

More blue ones are coming in on the 16th and should ship on the 17th, arriving by the 19th or 20th.

I have set the cost at the $5.00 that came up in the poll. That's a $2.20 profit which goes to the printing of the shipping labels, my time getting them all bagged up, printing the brochures that come with each, the costs associated with these boards and other sites (I listed them all below).

As I said before, people making donations of at least $15 (or subscriptions, after the 3rd month) to the website who also give me their mailing address will get a free band. When you fill out the PayPal form, be sure to give me your mailing address and band preference (yellow, medium or large, or blue, medium only).

The new blue bands are due to arrive here on June 16th, an updated date

I also wasn't clear enough in the above quote. The free bands are for people who make donations to the running of the websites, these message boards, the chatrooms and the toll-free number, but, unfortunately, NOT to CUSH. Since I paid for the bands myself and would have to pay for shipping, I can't afford to give them away to every one who joins or donates to CUSH. I wish I could, but I just can't. That's why I said at least $15, so I don't actually end up losing money.

CUSH is separate from these boards although we're all working for the same purpose and we're all the same members. But the money aspects are completely different.

CUSH was founded as a non-profit organization for Cushies, by Cushies and accepts membership and donations as a non-profit.

These boards, etc, were founded as a "public service" if you will, by one Cushie and the costs are now spiraling way beyond the original fees. With the new boards and the new server, the costs have risen even more. I hate to ask for donations and monetary help outright which is why I thought that these bands would bring in a little extra to help with some of the money that I have spent during the past 5 years and will spend in the future for these boards, the chatroom, the website, etc, etc. I hope that was a little clear! LOL

The bands ship out today to the first people who ordered. I was surprised, but the blue ones sold out fast. There are more of the blue coming in small, medium and large in about a week.

A new category added was for people to send a band to their Secret Someone.

Also added was Donate a Band to A Cushing's Patient at NIH. This band has no shipping charges and is at a lower price for those who feel that they would like to give something to someone at NIH.

MaryO will deliver your band to a Cushing's patient at NIH (the National Institutes of Health in Bethesda, MD) along with an information brochure. If you would like, she will include a note or a card from you. If you would like to send a note, either fill it in in the "notes" section here, in the "additional information" area of PayPal, or email Mary at CushingsSupport@aol.com If sending a check, you may include a card or personal note to go along with the bracelet(s).

After delivering the bracelet(s), Mary will contact you and let you know who the band(s) went to.

If there is any interest in this, people who regularly visit others - Shauna comes to mind - may have bands sent to them for delivery, as well.