Patients know more than most doctors do about Cushing's.
I was tickled pink to find this Google Knol page on Cushing's Disease/Syndrome and related endocrine disorders.
It is fantastic. Why? It is written by Robin from the Cushing's message boards, with help from the tenacious MaryO.
After testing for Cushing's for over 3 years, I learned a lot from the information posted on that page. The best part is that everything is in one place, with lovely links to medical literature and diagrams that spell it all out so clearly. Essential for our routine tete a tetes with our dear, sweet endocrinologists.
In addition, I want to draw your attention to a new blog that Robin has created to show how Cushing's affects her life every day. I bet you will find Robin's 365 Days with Cushing's Disease blog insightful.
I appreciate all of your inventive work, Robin and Mary. Thank you again for everything.
~Melissa
Friday, April 23, 2010
Thursday, April 22, 2010
Cushing's Awareness Month: What People Need to Know
April 8th is Harvey Cushing's birthday. I pay hommage to the good doctor here, so I want to move on to my latest finds.
While I didn't get a chance to post here about Cushing's Awareness Day, I set the facebook world on fire with multiple posts to my 200 friends that day.
* This disease is so underdiagnosed and testing is so complicated, we should get a whole month!!
* Did you know that 40% of the tumors causing pituitary Cushing's do not show up on high resolution brain MRIs?
* Did you know that there is no one test that determines the presence of Cushing's disease? Did you know that doctors want to see many high cortisol values in many different tests (urine, saliva, blood) that are often 3 to 4 times the upper limit of the normal range? Plus, doctors think that a high test value is 'lab error' and often ask for more testing of the test that already showed an abnormal value.
* Did you know that countless patients who do not meet these extremely high diagnosis protocals are told to go home, diet, exercise, stay off the internet, and stop wishing a disease onto themselves?
* Did you know that nearly all these patients do indeed have a neuroendocrine disease, get treatment years and years after the onset of symptoms, and they never hear an apology or receive any sympathy from those naysaying doctors?
* Did you know that Cushing's patients are often isolated from friends and family, because most think patients are just fat, lazy complainers?
* Did you know that many Cushing's patients survive this debilitating disease mostly by relying on friends made through online message
boards? Thank you, MaryO, for creating and maintaining Cushing's Help & Support, a place that so many of us can call home.
* Can you imagine being sick with a terrible disease and being told that, essentially, it is your fault? We go home wondering why doctors think we have the power to change our body's malfunctioning parts. Can you imagining living with this nagging thought from medical professionals for over 1,000 days? I began my testing specifically for Cushing's over three years ago. I am still sick, and I am facing additional surgeries to cure my reoccurence of Cushing's disease.
* Many brave Cushing's souls shared their humiliation and frustration regarding symptoms, testing, doctors, and surgeries in radio interviews in hopes of helping someone who hears themselves in their stories. You can download these interviews for free on iTunes.
* 80% of The Cushing's patients are women. This disease causes unexplained weight gain, central obesity often with a buffalo hump at the base of the neckmenstrual irregularities, infertility, mood swings, body aches, depression, headaches, diabetes, high blood pressure, extreme fatigue, muscle weakness, and osteoporosis.
* Not all doctors were A students in medical school. Many were B, C and D students. In 2010, do you really trust that your doctor is an expert in every disease out there? Beware. Research. Self-advocate. Get smarter. Get additional opinions.
* Scientists are learning that Cushing's can be genetic. Jackie, a member of our message boards, was featured on the show Mystery Diagnosis, where she discussed the diagnosis of her daughter Sam. Since then, Sam's sister Jordan was diagnosed with Cushing's. Later at the NIH, the gene (P...DE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Read more on Cushie.info.
======================
For those who are just researching Cushing's, I'd like to point you to one of my favorite posts on this blog: Tips to Steady your Feet & Diagnosed Quickly. Read it. Reread it. Remember it. Diagnosis is difficult. Living with this disease is more difficult. Make sure you muster up enough fight in you to save your own life.
======================
I recently found some very helpful information from the Seattle Neuroscience Institute's Pituitary Center. Dr. Ludlum discusses the basics of Cushing's, as well as the difficulties Cushing's patients face if the tumor is not completely removed in the 1st pituitary surgery. "When the 1st surgery is unsuccessful, Cushing's patients ultimately trade one disease for another."
You can see several videos describing the pituitary gland and Cushing's straight from the good doctor.
Dr. Mark Mayberg works alongside Dr. Ludlam and shares one of the best drawings I've seen to describe transsphenoidal surgery, the surgery commonly used to remove pituitary tumors.
Dr. Ludlum has published several Cushing's-related articles.
And for the Cushing's segment that led to the subtitle of this blog, I share Kate's story with you. Kate is a close friend and an inspiration to all of us with Cushing's. Kate is still fighting to combat the damage that years of excessive cortisol production has done to her body. She is a fighter, and she will win, like we all will. And in her famous words, Kate has taught me, and others, this keep word: ONWARD.
While I didn't get a chance to post here about Cushing's Awareness Day, I set the facebook world on fire with multiple posts to my 200 friends that day.
* This disease is so underdiagnosed and testing is so complicated, we should get a whole month!!
* Did you know that 40% of the tumors causing pituitary Cushing's do not show up on high resolution brain MRIs?
* Did you know that there is no one test that determines the presence of Cushing's disease? Did you know that doctors want to see many high cortisol values in many different tests (urine, saliva, blood) that are often 3 to 4 times the upper limit of the normal range? Plus, doctors think that a high test value is 'lab error' and often ask for more testing of the test that already showed an abnormal value.
* Did you know that countless patients who do not meet these extremely high diagnosis protocals are told to go home, diet, exercise, stay off the internet, and stop wishing a disease onto themselves?
* Did you know that nearly all these patients do indeed have a neuroendocrine disease, get treatment years and years after the onset of symptoms, and they never hear an apology or receive any sympathy from those naysaying doctors?
* Did you know that Cushing's patients are often isolated from friends and family, because most think patients are just fat, lazy complainers?
* Did you know that many Cushing's patients survive this debilitating disease mostly by relying on friends made through online message
boards? Thank you, MaryO, for creating and maintaining Cushing's Help & Support, a place that so many of us can call home.
* Can you imagine being sick with a terrible disease and being told that, essentially, it is your fault? We go home wondering why doctors think we have the power to change our body's malfunctioning parts. Can you imagining living with this nagging thought from medical professionals for over 1,000 days? I began my testing specifically for Cushing's over three years ago. I am still sick, and I am facing additional surgeries to cure my reoccurence of Cushing's disease.
* Many brave Cushing's souls shared their humiliation and frustration regarding symptoms, testing, doctors, and surgeries in radio interviews in hopes of helping someone who hears themselves in their stories. You can download these interviews for free on iTunes.
* 80% of The Cushing's patients are women. This disease causes unexplained weight gain, central obesity often with a buffalo hump at the base of the neckmenstrual irregularities, infertility, mood swings, body aches, depression, headaches, diabetes, high blood pressure, extreme fatigue, muscle weakness, and osteoporosis.
* Not all doctors were A students in medical school. Many were B, C and D students. In 2010, do you really trust that your doctor is an expert in every disease out there? Beware. Research. Self-advocate. Get smarter. Get additional opinions.
* Scientists are learning that Cushing's can be genetic. Jackie, a member of our message boards, was featured on the show Mystery Diagnosis, where she discussed the diagnosis of her daughter Sam. Since then, Sam's sister Jordan was diagnosed with Cushing's. Later at the NIH, the gene (P...DE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Read more on Cushie.info.
======================
For those who are just researching Cushing's, I'd like to point you to one of my favorite posts on this blog: Tips to Steady your Feet & Diagnosed Quickly. Read it. Reread it. Remember it. Diagnosis is difficult. Living with this disease is more difficult. Make sure you muster up enough fight in you to save your own life.
======================
I recently found some very helpful information from the Seattle Neuroscience Institute's Pituitary Center. Dr. Ludlum discusses the basics of Cushing's, as well as the difficulties Cushing's patients face if the tumor is not completely removed in the 1st pituitary surgery. "When the 1st surgery is unsuccessful, Cushing's patients ultimately trade one disease for another."
You can see several videos describing the pituitary gland and Cushing's straight from the good doctor.
Dr. Mark Mayberg works alongside Dr. Ludlam and shares one of the best drawings I've seen to describe transsphenoidal surgery, the surgery commonly used to remove pituitary tumors.
Dr. Ludlum has published several Cushing's-related articles.
And for the Cushing's segment that led to the subtitle of this blog, I share Kate's story with you. Kate is a close friend and an inspiration to all of us with Cushing's. Kate is still fighting to combat the damage that years of excessive cortisol production has done to her body. She is a fighter, and she will win, like we all will. And in her famous words, Kate has taught me, and others, this keep word: ONWARD.
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