Personal Stories

 
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A primary mission of the Sarcoidosis Network Foundation is to educate and provide support for sarcoidosis patients, their families, and caregivers.

If you are a newly diagnosed sarcoidosis patient, you may be a bit overwhelmed by what it means to have a disease which has no cure. While there is no cure known at present, there is treatment available, and support is available too. Perhaps you have wondered how sarcoidosis is going to affect your life, what to expect from the treatment available, and how to deal with having sarcoidosis..

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Were you surprised that your family doctor didn't seem to be very knowledgeable about sarcoidosis? Have you looked at the list of known side effects of treatment in dismay? Have you wondered what "treatment, but no cure" actually means for you? Have you wished that you could talk with other patients to see how they have coped with sarcoidosis, what changes it has made in their lives?

Many of us feel that we have greatly benefited from meeting and talking with other patients and their families. We feel less anxious to learn that other patients have experienced some of these same things, but, have discovered that some fears prove groundless, that there is life after diagnosis, and that there are ways to cope with some of the irritating problems or concerns that we have encountered.

Would you like to meet others, learn their experiences with doctors, family, employers, disability, feel mutual support and see how to cope? Would you like to know if other patients have had this or that symptom, or what some treatment was like?

We realize that there are other individuals and organizations that also seek the same goals. The foundation seeks to network with and to work cooperatively with others to achieve our mission.

We would like to make reaching and finding others easier for you, and we would like to hear from you too. Besides the link to our Facebook page, to the upper right, we have monthly meetings, conferences and recreational activities in which you are very welcome to participate. Hearing the personal stories of others is one of the best ways to see how your experiences and feelings are valid, real, and shared by others. Would you be willing to share your experiences with us? We would like to hear "your story"; would you be willing to share it with others? Do you keep a blog or journal that you would like to share?

If you would be willing to let us share you some of your experiences with others, please contact us at:

11428 East Artesia Blvd, Suite #10
Artesia, CA 90701
562-809-8500
E-Mail

or, use the "Webmaster" link at the bottom of the page. Yes, I too am a sarcoidosis patient.

 
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