Téra (HappyGirl), Video Bio
Monday Jan 24
Téra is a member of the message boards - you can respond to her posts here. Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there's some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, 'if one more doctor dismisses me, I am ending my life! I can't live like this anymore!' These are very important things to remember. Read more at https://cushingsbios.com/2021/04/24/tera-happygirl-video-bio/ Register for Rare Disease Week
Monday Jan 24
We are thrilled to invite you to join us and hundreds of others virtually for Rare Disease Week on Capitol Hill from February 22nd to March 2nd, for a week that can change your life. In 2022 advocates will once again have the opportunity to participate in the Points for Advocacy Scavenger Hunt and the EveryLife Foundation will award a total of $100,000 to the top-50 point earners' rare disease non-profit organization of choice! Over the last 11 years, thousands of rare disease patients, family members, friends, and health care providers have joined together to give rare disease patients a voice on Capitol Hill. Meeting virtually during the pandemic has not slowed us down but has reenergized many of us on the importance of our advocacy work. Read more at https://cushings.invisionzone.com/topic/56347-register-for-rare-disease-week/ Add or update Your Bio
Tuesday Jan 25
The Add Your Bio form has been updated so that it no longer requires Flash. Your information will help others.
I would like to add that if anyone would like to do something for the Cushing's Awareness Challenge but you don't have (or want to have) a blog, why not consider adding your bio to the website this month?
More info at https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/ Myth: “All Cushing’s patients have the exact same symptoms
Tuesday Jan 25
Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s. For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain. Read more at https://cushieblogger.com/2021/04/25/myth-all-cushings-patients-have-the-exact-same-symptoms-2/ Janice B, Pituitary Bio
Tuesday Jan 25
I was married 38 years when I became sick in 2011, but the family doctor and my husband wouldn’t believe me. They thought I was lazy, fat and crazy when they shipped me off to a mental ward in a hospital. I knew I was physically sick with Cushing’s Disease, but I couldn’t convince the psychiatrist. I left my husband, got a new doctor and was diagnosed with Cushing’s Disease in 2012. I had successful surgery in April 2013 to remove the pituitary tumor. I had Adrenal Insufficiency and was put on 5mg of prednisone as my body would not produce its own cortisol. Janice's bio includes a video. Read more at https://cushingsbios.com/2021/04/27/janice-b-pituitary-bio/ Light Up for Rare
Wednesday Jan 26
The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 25 million Americans and their families are believed to be affected by rare diseases. Participants are encouraged to light or decorate their homes in blue, green, pink, and purple at 7 p.m. local time on Feb. 28. (Blue should be used if only one color is possible.) NORD suggests using NovaBright to light up a building, monument, home, or neighborhood in these rare disease colors. More information at https://cushings.invisionzone.com/topic/56422-light-up-for-rare In Manchester? New Endocrinology Unit
Thursday Jan 27
These are the conditions which are diagnosed and treated by the clinic’s consultants. Some of the examples include thyroid problems, adrenal nodules, which may lead to Cushing’s syndrome with hypertension, diabetes and osteoporosis; or pituitary nodules, which may lead to pituitary deficiency or cause blindness. Some of these conditions are difficult to diagnose, and simple blood tests are not enough. In these cases, ‘dynamic tests’ are needed, which require significant expertise in how they are performed and how the results are interpreted. Previously these specialised tests required an inpatient stay, where patients would often have to wait for over few months. Read more at https://cushings.invisionzone.com/topic/55688-in-manchester-new-endocrinology-unit/ Hannah B, Pituitary Bio
Friday Jan 28
After countless doctors appointments and misdiagnoses, Hannah was diagnosed with Cushing syndrome. She has a tumor on her pituitary glad [sic] which causes it to release too much cortisol into her body, affecting her metabolism and growth hormones. It also affects her energy levels and her ability to recover from workouts. “Labs are normal, this is normal and I knew this was not normal. I had never felt so helpless,” Jamie Blankenship, Hannah’s mother said. “Once we found out and got that diagnoses and started reading and concentrating on the symptoms, we realized that was definitely what was going on she has every symptom.” Read more at https://cushingsbios.com/2021/04/30/hannah-b-pituitary-bio/ Basics: Testing: Dex Tests
Saturday Jan 29
Dexamethasone suppression test measures whether adrenocorticotrophic hormone (ACTH) secretion by the pituitary can be suppressed. How the Test is Performed Consecutive Adrenal Cushing’s Syndrome and Cushing’s Disease in a Patient With Somatic CTNNB1, USP8, and NR3C1 Mutations
Saturday Jan 29
The occurrence of different subtypes of endogenous Cushing’s syndrome (CS) in single individuals is extremely rare. We here present the case of a female patient who was successfully cured from adrenal CS 4 years before being diagnosed with Cushing’s disease (CD). The patient was diagnosed at the age of 50 with ACTH-independent CS and a left-sided adrenal adenoma, in January 2015. After adrenalectomy and histopathological confirmation of a cortisol-producing adrenocortical adenoma, biochemical hypercortisolism and clinical symptoms significantly improved.
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