What is Sjogrens Syndrome
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It is named after Swedish ophthalmologist H...
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My name is Michael Schwartz. I live in NJ and have a dear friend, an 85 year old woman, who was the companion of my late father. She has had Sjogrens for about six years and suffers from the usual excessive dryness and fatigue. She also developed lymphoma about five years ago, which is in a good state of remission. She lives by herself and lately has seemed more desperate and depressed about her condition. Tonight she called me and asked me about support groups, as she does not have a computer, nor does she know how to use one at a library for example. I found a contact in Toms River and passed on her telephone number. If anyone is willing to speak with my friend on the telephone, would you please contact me, and I will pass on her name and number. Thank you in advance.
Posted on 10/27/09, 09:10 pm |
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Michael, why don't you be the go between.
Let us know what she needs or what questions she would like answered? I'm sure some of us would gladly help out here. Is she on plaquenil? Sjogrens foundation is a great source for contacts. They have a number of contacts there for her to call in her area. People that have support groups and who knows one might be close by. Pine Beach : Support Group Leader: Cinde Partyka Contact Information: (732) 914-1019 
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Tom, thank you for the reply. I had found Cinde's name and number online and passed it on to Charlotte yesterday. I thought I would expand my efforts by contacting others through Daily Strength.
She is not on plaquenil, nor do I believe she ever has been. I'll suggest she ask her doctor about it. Honestly, I think she's in good hands doctor-wise. She sees a NYC-based rheumatologist, Dr. Spira, as well as another NYC doc for the lymphoma. They tell her she's doing fine, but she feels very fatigued most of the time. I think what she needs most is to be able to talk with other SS people, compare notes, and possibly get some encouragement. She told me she used to speak to a woman who had SS, but either the woman passed away or they simply lost contact.
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How was her lymphoma treated? I'd imagine that treatment has her feeling down.
Can I ask if it was her parotid gland that had the cancer? That is my biggest fear from this lousy disease. plaquenil has made life much better for most of us here, not a cure by any stretch but it can calm the fatigue down. She might have other things to deal with having had or having cancer. Get her on a computer! My mother in law is in her 80's and my mother too, both have facebook pages! She can do it. I'd also try a cancer support group if one is close by.
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