Acromegaly
I don't know how to explain how it is, being a giant. I put my shoes on in the morning, I'm like, 'Ugh, gosh they're growing again. I'm growing again - Tanya Angus
image by: Ken Hiller
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Tanya Angus
Tanya was an inspiration to me and many others across the acromegaly community. By being an acromegaly awareness activist, she saved lives and spared others from the suffering that comes with a delayed diagnosis. She went public with her struggles, which helped her fellow acromegaly patients remember we are not alone and that someone out there understands.
By sharing her story, she taught people to be compassionate and non-judgmental towards others, because she opened up about all the things she has to deal with behind the scenes, and this could happen to anyone. Throughout her life, Tanya was a role model of grace, kindness, humor, dignity, and purpose in the face of adversity.
Resources
Acromegaly: My DIY diagnosis
When Jon Danzig fell ill, doctors were baffled. Why had his nose, forehead and feet started getting bigger, and his voice deeper? Eventually, he found the answer for himself
Acromegaly: Tumor removal recommended as first-line treatment
People who develop gigantism as children also should be treated using surgery as the primary therapy, and then using medication or radiation treatment based on the individual's condition and response to treatment.
Why Was This Woman Gaining Weight Despite Her Diet?
“I just can’t seem to lose weight,” the 59-year-old woman said quietly. She had tried everything, she told the young doctor, who was training to be an endocrinologist at Mount Sinai Hospital in New York City. Weight Watchers. Exercise. She ate more vegetables, less fat, then fewer carbs. But still she was gaining weight
Tanya Angus
Tanya was an inspiration to me any many others across the acromegaly community. By being an acromegaly awareness activist, she saved lives and spared others from the suffering that comes with a delayed diagnosis.
Acromegaly Community
Community site as well as the latest news surrounding Acromegaly.
Acromegaly Diary
Stepping forward, one big foot at a time.
Acromegaly Support
We are here to provide support, education and information for those with Acromegaly.
Acromegaly.care
Welcome to Acromegaly.care, where we’re dedicated to sharing real-life acromegaly stories, helpful resources and practical tools for people with acromegaly and their friends and family.
Acromegaly.org
The symptoms of acromegaly can vary and they develop gradually over time; therefore, a diagnosis of this condition may be difficult. Early detection is a goal in the management of acromegaly because the pathologic effects of increased growth hormone (GH) production are progressive.
New Zealand Acromegaly Society
Acromegaly is a rare disorder that patients and their families often feel overwhelmed and isolated. It was due to those feelings that the New Zealand Acromegaly Society was formed in 2010.
Vancouver Acromegaly Support Group
This is the website of the Vancouver Acromegaly Support Group which is focused on providing support for acromegaly and gigantism patients in British Columbia, but also other provinces in Western Canada.
Acromegalic Princess
A site especially intended for people who share my affliction--ACROMEGALY
Acromegaly Bloggers
A centralized place for Acromegaly bloggers as well as support for those with acromegaly.
Acromegaly Ramblings
I have a very rare disease called acromegaly. The reason I'm posting about this is there's very little information regarding personal experiences with acromegaly. I feel like I have to put myself out there to offer information on the experiences I've had. And I would like to know more about how this will affect me in future.
Tanya Angus
Acromegaly and other pituitary diseases can strike anyone! Learn more, learn the truth here...
Target: Acromegaly
My experience with Acromegaly.
World Alliance of Pituitary Organizations
Acromegaly develops when too much growth hormone (GH) is circulating through your bloodstream and then affects body cells. It’s an uncommon condition that generally affects adults between the ages of 30 and 50. The onset is slow, and acromegaly is often undiagnosed in the early stages.
4 in a Million - Stayin' SWAG with Acromegaly
4 in a million are diagnosed with Acromegaly each year. Whether you're touched by it or not, we hope you'll be inspired to thrive on!
Chiasma
Acromegaly is a rare disorder caused by an overproduction of growth hormone (GH). In the United States, there are about 1,000 new cases of acromegaly each year, with a prevalence of 68 per million. Worldwide, about 40,000 people are affected by the disorder. Acromegaly usually affects middle-aged men and women. It is usually caused by a benign tumor of the pituitary gland, a small gland – about the size of a pea – located just below the brain that controls many body functions, such as growth, metabolism and reproductive activities.
Highlights
Check out our acromegaly posts and videos featuring professional makeup tips aimed to highlight your best features, along with relevant disease education information!
MayoClinic
Because acromegaly is uncommon and physical changes occur gradually, the condition often isn't recognized immediately; sometimes not for years. If not treated promptly, acromegaly can lead to serious illness and even become life-threatening. However, available treatments for acromegaly can reduce your risk of complications and significantly improve your symptoms, including the enlargement of your features.
MedlinePlus
Acromegaly is a rare condition. It is caused when the pituitary gland makes too much growth hormone. The pituitary gland is a pea-sized endocrine gland located at the base of the brain. It controls, makes, and releases several hormones, including growth hormone. Usually a noncancerous (benign) tumor of the pituitary gland causes the gland to release too much growth hormone. In children, too much growth hormone causes gigantism rather than acromegaly.
National Institute of Diabetes and Digestive and Kidney Diseases
When GH-producing tumors occur in childhood, the disease that results is called gigantism rather than acromegaly. A child's height is determined by the length of the so-called long bones in the legs.
Patient
The aim of management is to control the symptoms caused by the local effects of the tumour and due to the excess hormone production, and to normalise hormone levels. No single treatment is completely effective in achieving these aims and so a combination of treatments is required. •Trans-sphenoidal surgery is the treatment of choice in most cases •However, endoscopic trans-sphenoidal treatment for GH-secreting pituitary adenomas has shown similar outcomes for non-invasive macroadenomas compared with traditional microsurgical techniques...
Somatuline Depot
Somatuline Depot is a prescription medicine used for the long-term treatment of acromegaly when surgery or radiotherapy has not worked well enough or the patient is not able to have surgery or radiotherapy.
Somavert
SOMAVERT is a prescription medicine for acromegaly. It is for patients whose disease has not been controlled by surgery or radiation, or patients for whom these options are not appropriate. The goal of treatment with SOMAVERT is to have a normal IGF-I level in the blood.
Somavert
Use your AcroTracker app as a discussion tool with your doctor to review your signs and symptoms, and your injection schedule.
UpToDate
Acromegaly is uncommon; only three to four cases are diagnosed per million people each year. It develops very gradually and may not be recognized until it has been present for many years. Acromegaly can lead to serious illness if not treated; however, most patients can be treated successfully.
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