Pat ElliottExpertHERWriterGuideBlogger(reply to Redskinsrule)
Redskinsrule - Thanks for writing and I'm glad you found EmpowHER. We aren't able to provide medical advice, but can help you in getting to the right resources. I know from personal experience how frustrating it can be to have a rare medical condition and not be able to get the information you need. What has really helped me is joining support groups, both locally and in other countries. In my own case I have found that Canada is often far ahead of the US in providing the most helpful, and most current information.
I did some research for some organizations that might be able to help you, and found a Directory of U.S. support groups at Sarcoid Life: http://www.sarcoidlife.org/ and the following list as well:
http://www.sarcoidosisnetwork.org/groups.htm I also found a group, with 480 members, on Daily Strength: http://www.dailystrength.org/c/Sarcoidosis/support-group
Support groups can be very helpful in terms of sharing what has worked for members and also in helping locate physicians who specialize in rare conditions. You may need to change doctors to get what you need and to get the best care. I hope you'll look into these and see if there is a group that will help you help yourself, and wish you the best. Please stay in touch.
Take care,
Pat
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Redskinsrule - Thanks for writing and I'm glad you found EmpowHER. We aren't able to provide medical advice, but can help you in getting to the right resources. I know from personal experience how frustrating it can be to have a rare medical condition and not be able to get the information you need. What has really helped me is joining support groups, both locally and in other countries. In my own case I have found that Canada is often far ahead of the US in providing the most helpful, and most current information.
I did some research for some organizations that might be able to help you, and found a Directory of U.S. support groups at Sarcoid Life: http://www.sarcoidlife.org/ and the following list as well:
http://www.sarcoidosisnetwork.org/groups.htm I also found a group, with 480 members, on Daily Strength: http://www.dailystrength.org/c/Sarcoidosis/support-group
Support groups can be very helpful in terms of sharing what has worked for members and also in helping locate physicians who specialize in rare conditions. You may need to change doctors to get what you need and to get the best care. I hope you'll look into these and see if there is a group that will help you help yourself, and wish you the best. Please stay in touch.
December 14, 2010 - 5:22pmTake care,
Pat
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