MaryO
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Status Updates posted by MaryO
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Sosei Group Corporation ("the Company"; TSE: 4565), announces that the first healthy subject has been dosed with a novel small molecule HTL0030310 in a Phase I clinical study, marking the start of a new in-house clinical program targeting endocrine disorders, including Cushing's disease...<br />
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HTL0030310 has been designed to modulate the excess release of hormones from adenomas (benign tumors) of the pituitary gland. Highly elevated plasma levels of pituitary hormones result in a number of serious endocrine disorders, including Cushing's Disease.Read more at https://cushieblog.com/2019/02/20/sosei-heptares-starts-new-clinical-development-program/
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Stephanie is from Eielson AFB Alaska. She has had two pituitary surgeries, gamma knife and has taken mifepristone.
Read more at https://cushingsbios.com/2018/11/07/stephanie-m-stephanie-pituitary-bio/
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Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they’re checking for ACC cancer. Steve also has a newspaper article written about him. Steve’s daughter may also have Cushing’s.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/10/interview-with-steve-owens
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Stuart is from Brisbane, Australia His daughter's chronic weight gain plus all the other acute symptoms ruin her life, and chip away at her once-immense self-esteem.
Read more at https://cushingsbios.com/2018/04/04/stuart-m-parent-of-a-teenager/
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Summer is from Fresno CA. She had pituitary surgery 1-24-17 and had a lot of trouble weaning off steroids post-op.
Read more at https://cushingsbios.com/2018/05/06/summer-j-summer84-pituitary-bio/
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Tamara is from Louisiana and Illinois She has been told by three physicians including Pacific Neuroscience Institute and a Harvard physician that she has Cushing’s Disease.
Read more at https://cushingsbios.com/2018/04/03/tamara-k-pituitary-bio/
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Terry (Terry) is a long time pituitary Cushing’s survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers. In Sept 2005 the surgeon remove the infection from one area, making another area clear…..
Listen at https://cushieblogger.com/2018/04/16/archived-interview-with-terry-g-pituitary-patient/
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The above is the official Cushing's path to a diagnosis but here’s how it seems to be in real life...
Read more at https://cushieblogger.com/2018/04/09/day-9-cushings-awareness-challenge-2018/
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The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us. Natalie was the Cushie in the middle.
Today is the anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice earlier.Read more at https://cushieblogger.com/2018/04/21/day-21-cushings-awareness-challenge-2018/
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The original image was one a couple males, a couple females and a dog walking/running. No folks in wheelchairs, no older folks and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
Read more at Day 26: Cushing’s Awareness Challenge 2018
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The problem with Addison's disease is that only 1 out of 100,000 people get this. Lisa's symptoms were classic, vitilago which are white spots, darkened pigment, and flu like symptoms. Even in this day and age doctors can miss a case of Addison's.
Read more at http://addisonshelp.blogspot.com/2009/07/my-daughter-lisa-marie-bates-died.html
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The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.
Read more here https://cushieblogger.com/2018/04/01/register-for-2018-rare-patient-advocacy-summit/
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The resection of microadenomas — small, benign tumors in the pituitary gland underlying Cushing’s disease — could be aided by a fluorescent marker that is naturally produced by the tumor, a new study shows.
Read more at https://cushieblog.com/2018/04/14/fluorescent-metabolite-might-help-surgeons-remove-pituitary-tumors/
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The worldwide prevalence of metabolic syndrome in obese people is estimated at about 10%. Conversely, the incidence of undiagnosed Cushing’s syndrome is about 75 cases per 1 million people.
Cushing’s and metabolic syndrome share significant clinical similarities, including obesity, hypertension, and type 2 diabetes. Therefore, “making the diagnosis is the least certain aspect in the care of patients with [Cushing’s],” Dr. Lynn Loriaux wrote.
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There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on...
Read more at https://cushieblogger.com/2018/04/10/myths-and-facts-about-cushings-all-types-of-cushings-are-the-same/
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There are some ideas in the post below and some at http://www.cushings-info.com/index.php?title=Help_Yourself,_Part_1 (and also parts 2 and 3!)
Do you have any other helpful tips for the New Year?
Read more at https://cushieblog.com/2017/01/02/some-lifestyle-tips-for-cushings-syndrome/
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There are two main causes of high cortisol: Chronic stress and more rarely, Cushing’s disease. Cushing’s disease is caused by a hormone-secreting tumor on the adrenal gland which results in the release more cortisol than required.
Living with chronic stress also leads to high cortisol because the release of cortisol is a natural response from the body when it is stressed. The hypothalamic–pituitary-adrenal [HPA] axis is what regulates the timely release of cortisol during acute stress, but when stress becomes chronic the feedback from the HPA becomes damaged and so cortisol continues to be released.
Read more at http://cushings.invisionzone.com/index.php?/topic/54177-high-cortisol-symptoms-and-signs/
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This is a Myth! More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense.
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This is a tough one. Sometimes I’m in “why me” mode. Why Cushing's? Why cancer? Unfortunately, there’s not a thing I can do about either. Cushing's, who knows the risk factors? For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not? No particular reason why I should be exempt from anything.
Read more at https://cushieblogger.com/2018/04/20/day-20-cushings-awareness-challenge-2018/
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This study was performed to assess how frequently preoperative medical treatment (PMT) was given to Cushing's syndrome (CS) patients across Europe and to investigate differences in preoperative characteristics of patients who receive PMT and those who undergo primary surgery.
Read more at https://cushieblog.com/2018/02/14/preoperative-medical-treatment-in-cushings-syndrome/
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Tips for living with Cushing's - before, during and after treatment. Please feel free to add your own tips here!
Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.
For specific tips such as Getting Medical Attention for an Adrenal Crisis or how to make an Emergency Kit, please see Helpful Hints
Read more at http://www.cushings-info.com/index.php?title=Help_Yourself,_Part_1
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To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better. I told a very close friend of mine the other day, if I had the power I would heal everyone you today. Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.
Read more at https://cushieblogger.com/2017/11/14/letter-to-cushies/
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Today I challenge a wonderful woman who I really admire Mary Kelly O'Connor who can disregard if she's already been tagged or doesn't want to take part (completely understand as I know these posts can be annoying) but I just wanted to select you because as the founder of the website www.cushings-help.com that saved my life when I was diagnosed and I made some wonderful life-long friends all across the World as a result. I am so glad I found that website and the beautiful souls that shared their stories and wealth of knowledge.
Read more at https://cushieblogger.com/testimonial/diane/
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Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…
Read more at https://cushieblogger.com/2018/04/30/day-30-cushings-awareness-challenge-2018/
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Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don’t just raise awareness on April 8. Any day is a good day to raise awareness.
Read more at https://cushieblogger.com/2019/04/08/day-8-cushings-awareness-challenge-2019/
