Sarcoidosis
There are no such things as incurables; there are only things for which man has not found a cure - Bernard Baruch
image by: Sarcoidosis Research
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Sarc-a-WHAT?
Sarcoidosis is a debilitating fatal chronic systemic (whole-body) inflammatory disease. Very little is known about this hidden and great imitator disease, other then there is no cure or known cause (idiopathic). Often times, patients are misdiagnosed with metastasis lymphoma (cancer), lupus, fibromyalgia, MS, TB, etc.
Full-body PET Scans and the like, should be a general course of action for proper systemic diagnosis, however, very few patients ever receive the proper testing or it may take several years to finally receive adequate medical care from one of the few specialized clinic/hospitals in the states. Furthermore, to complicate matters, those afflicted can also have secondary…
Resources
Why Was the Middle Aged Man’s Heart Beating so Dangerously Fast?
It’s not clear what triggers the illness to start or why or how it spreads. It’s commonly seen in young adults and often in African-Americans. Though the man and his sister were of Eastern European descent, and the disease doesn’t usually afflict siblings, Horn thought sarcoidosis was the most likely diagnosis.
Sarcoidosis? What?
Sarcoidosis is complicated, often overlooked, and misunderstood. The good news is that sarcoidosis is not necessarily a death sentence. Unfortunately there is no way to predict which patients will remit and which will go on to have long term complications.
Making a Difference: The World of Giving -- Sarcoidosis Awareness Month
A few months ago was when I first heard this word and yes, when I first heard the word "sarcoidosis" I had to ask for it to be repeated a number of times. I just couldn't understand what was being said or what it meant. It seems I am not alone.
Sarcoidosis as an Autoimmune Disease
Sarcoidosis is a multisystem granulomatous disease of unknown origin with predominant lung involvement, variable clinical course, and no universally accepted treatment algorithm.
Sarcoidosis poses threat of disability and death, and its origin remains uncertain
Doctors can’t always predict whether sarcoidosis will go away on its own or will remain a chronic complaint. “There are no blood tests that allow us to determine the severity of the disease,” says Morgenthau. “But there are some clinical cues. For instance, patients with skin disease, spleen or bone involvement all tend to have the disease for a longer time.”
Sarcoidosis: still a mystery?
Sarcoid has a worldwide distribution. It typically occurs in individuals between 20 and 40 years of age, and women are affected twice as often as men. African Americans are affected more than whites, at a ratio of 8:1...
The Image of Sarcoidosis
The most common presenting findings are thoracic lymphadenopathy, lung parenchymal abnormality, and lesions of the skin and eye.
Sarc-a-WHAT?
Sarcoidosis is a debilitating fatal chronic systemic (whole-body) inflammatory disease. Very little is known about this hidden and great imitator disease, other then there is no cure or known cause (idiopathic). Often times, patients are misdiagnosed with metastasis lymphoma (cancer), lupus, fibromyalgia, MS, TB, etc.
Sarcoidosis News
Sarcoidosis News is strictly a news and information website about the disease.
Foundation for Sarcoidosis Research
FSR embraces a new model of medical research support that counters the traditional establishment. Our goal is to have promising therapies move quickly from the laboratory to the patient, and we do so through collaborations and strategic funding.
Janine Sarcoidosis Outreach Foundation
The mission of JSOF is to raise the awareness of Sarcoidosis and its health issues through educational campaigns for all. It is also designed to strengthen patient/physician relationships, provide support through actual group meetings, online and via telephone, and empower sufferers to become advocates for themselves, thus helping patients to cope while dealing with Sarcoidosis over long periods of time.
Sarcoidosis Europe
The 'Sarcoidosis Europe' with national sarcoidosis patients' associations and along with many ambrella organisations on other rare disorders in Europe is engaged for several years now to foster a network of expert centers in Europe collaborating for the benefit for Sarcoidosis patients, especially severely affected patients. This is a model for interdisciplinary and cross-border collaboration in health care.
Sarcoidosis Network Foundation
The Mission of the Sarcoidosis Network Foundation Inc. is to promote education and awareness; support research to find the cure and prevention; and, to improve the quality of life for those affected by sarcoidosis.
Sarcoidosis Research and Education Foundation
The Sarcoidosis Research and Education Foundation was established to directly support Sarcoidosis (Sarcoid) research and education at the University of Minnesota.
Sarcoidosis Soldier
Life with chronic illness and other ramblings about life.
The Bernie Mac Foundation
We are dedicated to a more thorough understanding of Sarcoidosis the disease, its impact on patients’ lives and current opinion regarding treatment. This international community of thought leaders, healthcare providers (researchers and clinicians) and patients will raise funds to support research and create education-based opportunities for patients and their families.
The Sarcoidosis Experience
Since a century has passed from the first case of what they thought to be skin Sarcoid this disease is still just as mysterious, elusive, and misunderstood as that first day. This is why research, studies, and awareness are the key to successfully finding a cause and that hopeful treatment regime we all have been waiting ever so patiently for.
World Association for Sarcoidosis and Other Granulomatous Disorders
The WASOG was founded in 1987 by Dr. Geraint James in Milan, Italy, during the World Congress for Sarcoidosis. The topics WASOG is focussing on are interstitial lung diseases (ild). Many ild (e.g. sarcoidosis) are part of a larger systemic problem, where the lung may be a minor target; others (e.g. idiopathic pulmonary fibrosis) are nearly exclusively a lung problem from the beginning.
Life & Breath Foundation
The Life and Breath Foundation was founded in 1998 to help support, guide, and inform the many individuals who suffer with the disease as well as supporting the clinical research of Sarcoidosis.
Life As An Anomaly
One man's positive journey through life with sarcoidosis and in general.
Mike & Sarcoidosis
When I was diagnosed with Sarcoidosis I had no idea what to expect or how it would impact my life. I created this blog to potentially help others in this same situation. Hopefully you can find some insights as to what life might be like, what some of the challenges might be and hopefully laugh a little with me along the way.
National Heart, Lung, and Blood Institute
Sarcoidosis can affect any organ in your body. However, it's more likely to affect some organs than others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).
American Lung Association
Nobody can predict how sarcoidosis will affect one person verses another. It is not serious in over half the cases. The disease appears briefly and heals naturally, without treatment. Some people don't even realize they have sarcoidosis.
British Lung Association
This information is for people with sarcoidosis, their families, friends and carers.
Chest Foundation
Sarcoidosis can go into remission, a period when the disease no longer causes symptoms or problems in the body. More than half of the people who have sarcoidosis will experience remission within 3 years of their diagnosis, and two-thirds will go into remission within 10 years of diagnosis.
MedicineNet
Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson's disease or Boeck's disease. Dr. Boeck went on to fashion today's name for the disease from the Greek words "sark" and "oid," meaning flesh-like. The term describes the skin eruptions that are frequently caused by the illness.
NHS
Typical symptoms include tender, red bumps on the skin, shortness of breath and a persistent cough. However, every person is affected differently and symptoms depend on which organs are affected. There's no cure for sarcoidosis, but the condition often improves without treatment within a few months or years. The symptoms are not usually severe and don't tend to affect everyday life.
Patient
Sarcoidosis is a condition where tiny lumps (nodules), known as granulomas, develop at various sites within your body, due to inflammation. It most commonly affects the lungs. However, it can affect almost any part of the body. The exact cause is not known. In many people, sarcoidosis goes away without any treatment. However, in some people, it can become long-standing, and serious, requiring treatment.
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