Behind the Mystery Rare & Genetic Series - Endogenous Cushing's Syndrome
Ойын-сауық
On today’s special series “Behind the Mystery” we’re talking about Cushing’s Syndrome, a rare hormonal disorder that is too often misdiagnosed where patients are simply told to just lose weight! An estimated 25,000 patients in the United States and 40,000 patients in Europe are currently diagnosed with endogenous Cushing’s syndrome. Endogenous Cushing’s syndrome is believed to be underdiagnosed due to lack of disease recognition by the treating physician, which often leads to a delay in diagnosis on average of six years. Watch Host Olga Villaverde of The Balancing Act talk with Dr. Maria Fleseriu and patient Leslie Edwin, who’ll be on the show to raise awareness about this rare disease, and discuss symptoms and diagnosis of Cushing’s syndrome.
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My tumor was on my adrenal gland 2 yrs and google and I diagnosed cushings which was proved to be my diagnosis! You are your best advocate!
😢😢 I understand because this is my current plight.
Well done Leslie 👍 you are the mouth piece sufferers need ❤️🙏
Thank you for sharing your story, l have been sick with autoimmune diseases for over 30 years and still are having problems , these things need to become easier, before people reach old age ! Thank You 🙏 n God Bless You
I think I have this and need a good doctor and the funds
I have had been seen now by 4 endocrinologist which i have had 2 saliva test come back high and also a 2ml pituitary tumor located by MRI of brain.Now i have been referred to a new endocrinologist that refuses to do the saliva test due to my sleep being irregular and because i smoke . I can understand that i would need to stop smoking for 24 hours to take the saliva test ( but never had to stop before but for 4 hours prior to test) but to regulate my sleep when i live with other chronic pain disease's isn't going to ever happen . So any info to help me out would be greatly appreciated.
My daughter is 19 and been dealing with this shit fir ten years !!! Finally dx three days ago . Smfh . Now she has to get surgery in this pandemic .
@CSRFrecordings
3 жыл бұрын
Hi Gwen, how is your daughter doing? Please let us know if we can be of any assistance with support or information. leslie@csrf.net
@birdmp7573
2 жыл бұрын
Our 19 yr old daughter is getting mri on pituitary next week. her acth was very high along with cortisol level. no period for years levels show she is post menopause. She feels all alone and hasn't told her small amount of friends yet. We are waiting patiently taking each day moment by moment. would love to hear how your daughter is doing?
My friend has Prader Willi Syndrome