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August 20, 2019

Blood Clots Might Hinder Diagnosis of ACTH-producing Tumors Outside Brain, Case Report Says

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Cushing’s syndrome can cause blood clots, which might interfere with the pinpointing of ACTH-producing tumors in uncommon places such as the lungs, a case report suggests. The study, “Pulmonary ... Read more

August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 13, 2019

Corticosteroid-based Creams Can Cause Secondary Cushing’s Syndrome in Infants, Case Report Shows

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Using topical creams with high corticosteroid concentrations to manage skin rash in infants can lead to the development of drug-related secondary Cushing’s syndrome, a case report shows. Therefore, the ... Read more

August 8, 2019

Cushing’s Patients’ Thyroid Hormone Levels Eventually Normalize Following Transsphenoidal Surgery, Study Finds

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Most Cushing’s disease patients who achieve remission experience overproduction of thyroid hormones, followed by a return to normal levels, within 12 months after surgery to remove a pituitary tumor, according to new ... Read more

August 6, 2019

Cushing’s Syndrome May Cause Heart Failure During Pregnancy, Case Report Suggests

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Cushing’s syndrome might lead to congestive heart failure — when the heart pumps blood inefficiently, causing stress in internal organs and fluid retention — in pregnant women, a case ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

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Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

August 1, 2019August 2, 2019

Signifor Reduces Urinary Cortisol Levels, Enables Cushing’s Disease Control Over 12 Months, Small Study Reports

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Treatment with Signifor (pasireotide) over 12 months reduced urinary cortisol levels and enabled full disease control in a subset of 14 patients with Cushing’s disease who were monitored at ... Read more

August 1, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

July 30, 2019

ACTH Testing, MRIs Recommended for Predicting Nelson’s Syndrome After Bilateral Adrenalectomy, Study Says

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People with Cushing’s disease who have a bilateral adrenalectomy should be regularly assessed for their adrenocorticotrophic hormone (ACTH) levels, and undergo periodic magnetic resonance imaging (MRI) analysis of residual ... Read more

July 25, 2019

Repeat Transsphenoidal Surgery Effective in Patients with Recurrent Cushing’s, Study Reports

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Repeat transsphenoidal surgery (TSS) in patients experiencing recurrence of Cushing’s disease after the initial procedure is effective and associated with high rates of sustained remission, according to a new ... Read more

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