And It's About Time There Was Some Support For Cushing's!
From the Testimonials Page
Cushing's syndrome, also known as hypercortisolism or hyperadrenocorticism, is an endocrine disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol (in the blood) from a variety of causes, including primary pituitary adenoma (known as Cushing's disease), primary adrenal hyperplasia or neoplasia, ectopic ACTH production (e.g., from a small cell lung cancer), and iatrogenic (steroid use). It is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year. Cushing's was discovered by American physician, surgeon and endocrinologist Harvey Cushing (1869-1939) and reported by him in 1932.
Normally, cortisol is released from the adrenal glands in response to ACTH being released from the pituitary gland. Both Cushing's syndrome and Cushing's disease are characterized by elevated levels of cortisol in the blood, but the cause of elevated cortisol differs between the two.
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Cortisol helps maintain blood pressure and cardiovascular function and is responsible for helping the body respond to stress. Many people suffer the symptoms of Cushing's syndrome because they take steroids such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation. Prednisone is well-known for a "bloating" look that it gives people who take it.
Others develop Cushing's syndrome because of overproduction of cortisol by the body due to a tumor on the pituitary (usually an adenoma or benign tumor of the pituitary glands) or adrenal glands, or elsewhere in the body Adrenal cancers, or other adrenal abnormalities may be the cause of Cushing’s Syndrome as well.
People who have been diagnosed with depression, alcoholism, malnutrition and panic attacks tend to have higher cortisol levels as well. These types of Cushing's may be called Pseudo-Cushing's.
Symptoms vary, but most people have upper body obesity (central obesity), rounded face ("moon face"), increased fat around the neck and on the back of the neck (buffalo hump), and thinning arms and legs. Children tend to be obese with slowed growth rates.
Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks (straie) may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.
Most people have severe fatigue, weak muscles, persistent hypertension (due to the aldosterone-like effects) and insulin resistance, leading to hyperglycemia (high blood sugars) which can lead to diabetes mellitus. Patients frequently suffer various psychological disturbances, ranging from euphoria to frank psychosis. Depression and anxiety, including panic attacks, are common.
Women usually have excess hair growth (hirsutism) on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop (amenorrhoea). Men have decreased fertility with diminished or absent desire for sex.
Other symptoms include excess sweating, telangiectasia (dilation of capillaries, spider veins), atrophy of the skin (which gets thin and bruises easily) and other mucous membranes, proximal muscle weakness (hips, shoulders).
The excess cortisol may also affect other endocrine systems and cause, for example, reduced libido, impotence and infertility.
Untreated Cushing's syndrome can lead to heart disease and increased mortality. Excess ACTH may also result in hyperpigmentation of the skin.
The message boards are very active and we have weekly online chats, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum in honor of Dr. Harvey Cushing's birthday April 8, phone support and much more. Whenever one of the members of the boards gets into NIH, we try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
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