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Lupus Foundation of Mid and Northern New York  |
Blog
Your comments and suggestions are always
welcome. This blog site provides a forum for
electronic feedback and is monitored to ensure
any concerns are addressed in a timely manner.
If you need additional information, please contact
us by e-mail at lupusmidny@aol.com or by phone at
315-829-4272 or toll free 1-866-258-7874. Thank you.
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Posted
by Kathleen on 9/17/2009 at 6:48:52 PM EST.
Subject: Getting a Diagnosis |
Dear Cynthia Green,
Usually a Family Practitioner or Primary Care Physician does preliminary labs and if any are indicative of an autoimmune rheumatologic disorder they then refer the patient to a Rheumatologist. Please feel free to call me at 315-829-4272 to discuss this further. Thank you. |
Posted
by Cynthia Green on 9/13/2009 at 12:04:23 PM EST.
Subject: getting a diagnosis |
My daughter has many symptoms of SLE along with a pos. dbl stranded DNA and we cannot find a Dr. who will explore the possibility that it may be Lups. They all say she is not sick enough. She has had to alter her life and she is only 20! She has been sick for over three years. Where do we go, we need help! |
Posted
by Sandi on 8/16/2009 at 2:24:38 PM EST.
Subject: Lupus Charity Golf Classic |
Thank you for a wonderful Golf Classic again this year. All the volunteers were outstanding and the whole event was organized and ran very smooth. I hope that everyone will join us again next year for a wonderful time. Bravo Kathleen!!!! |
Posted
by Sara Booth on 4/26/2009 at 6:45:18 AM EST.
Subject: reactions after rituximab |
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Posted
by Pam on 12/19/2008 at 7:55:40 AM EST.
Subject: web site |
| Thanks so much for your web site. I just didn't know where to begin when I got my diagnosis. I can't wait to attend one of the educational meetings! |
Posted
by Bill on 6/17/2008 at 4:48:51 PM EST.
Subject: photosensitivity tips |
| To Sam and any others who want to know some tips about photosensitivity - There are many things you can do besides using sunscreen. You can purchase clothes that reflect UV rays, wear hats that have UV protection. Rit Dye has a product you can wash into your clothes for UV protection. Plan your outings for late in the day. Tint your windows in your car and home. Does anyone else have some good ideas? Please share... |
Posted
by Kathleen on 6/12/2008 at 12:30:21 AM EST.
Subject: Bronx Lupus |
| Tasha have your sister contact the SLE Lupus Foundation at 212-685-4118. They have a Bronx Co-op. Good luck. |
Posted
by Maryrose Bullock on 6/12/2008 at 12:24:21 AM EST.
Subject: Appreciation |
| Kathleen
I want to take a moment to let you know how much I appreciate YOU and all the wonderful people that I have meet from the Lupus Foundation. I have learned so much about S L E from everyone. I have learned that I was not alone;which has made the biggest different in my life. You are one of the many angels that are in my life. I also want to thank you and everyone for all the hard work that went into the Symposium. I thought that it was WONDERFUL and full of good ideas. My sorroity sisters and family members that were with me also agree that it was wonderful and want to know if they could come back again next year. Finally I would like to thank you for my surprise award for public awareness of Lupus. I was totality Surprised! I did not see that one coming.:) :) :) :)
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Posted
by Sam on 5/31/2008 at 3:56:42 PM EST.
Subject: photosensitivity |
| What are some tips other than sun block for photosensitivity? |
Posted
by Tasha Moore on 5/15/2008 at 11:49:31 AM EST.
Subject: My sister and Lupus |
| My sister has Lupus and I am very interested in finding out more information for her sake. She now resides in Bronx, NY getting medical help from up there. |
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