TOSS

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Education, Awareness and Support

The Timmons Organization for Sarcoidosis Support was founded with the following purposes: to educate its members, members of the medical community, and the general public about sarcoidosis, an often misunderstood autoimmune disease that has no known cause or cure; to provide support to other organizations and members of the scientific and medical communities that are advancing the causes of sarcoidosis research; and to provide financial relief to families and individuals affected by this disease.

For more information about the disease, or to learn more about how we can help, please contact us by phone, email, or in writing.

Information or interview requests by members of the media can be made by sending an email. We will respond within 24 hours.

What is Sarcoidosis?

Sarcoidosis is an autoimmune disease, an inflammatory multisystemic disorder. It is characterized by the formation and accumulation of noncaseating granulomas in the affected tissue. Its cause is unknown, and there is no known cure. Sarcoidosis affects people of all racial and ethnic groups, all ages and genders, and of all sociological, economic and geographic background. An increased incidence of the disease has taken place with those directly involved with the onsite responders and volunteers at the World Trade Center after the events of 9/11, so environment and air quality likely play a role, in combination with some genetic factor. There is no evidence to suggest that it is passed down in families, however, making a genetic link hard to identify.

Sarcoidosis most commonly involves the lungs, but any organ in the body can be attacked. When infected with sarc, the organ's normal function can become compromised in varying degrees, from no noticeable change in function to complete failure of the organ. Many cases of sarc appear to get better, either on their own or with treatment. The most popular treatment is the use of corticosteroids, usually prednisone. For many others, though, reality is much grimmer. Their sarc does not respond to treatments, and the longer the disease progresses, the more debilitating it becomes, and the worse these people feel. Chronic sarc compromises their immune system, leaving them susceptible to other illnesses and diseases. Chronic sarc patients often have secondary conditions, such as fibromyalgia or chronic fatigue syndrome. Sarcoidosis can be fatal, when it prevents normal function of a vital organ, such as the heart.

On many websites and in many medical articles you can find statistics that complement what has been mentioned in this article. I chose to leave them out. I will save them for future articles. The problem with medical statistics is that they have a way of minimizing how sick a person may be, and they have a way of swaying one's opinion about a sick individual. To me, that is an insult to those who suffer every day with this disease.

This site seeks to provide a resource for information, community and support. The information contained is not intended to substitute for qualified, individual medical care - please consult your physician.