Sjogren's E-Pals
E-Pal Want Ads 2003
• 2009 • 2008 • 2007 • 2006 • 2005 • 2004 • 2003 • 2002 • 2001 •
(browse all of them in one plain text file)
Don't forget to read the older ads, the more "experienced" E-Pals from previous years.
An E-pal is an Internet Pen Pal. Living with Sjögren's Syndrome can be very difficult, very lonely. Only those who have Sjögren's can truly understand how we feel. It’s important to have someone to "talk" to when no one else understands. An Sjogren's World E-Pal can be that special friend for you.
* To get a Sjögren's E-Pal you must first place your own E-Pal ad. For more information and to submit your own E-Pal Want Ad, click here. Requests are limited to 5 at a time.
"Special Requests" E-Pals Also:
Parent's of Children with Sjögren's looking for E-Pals, Caregivers of those who have Sjögren's and Teenagers with Sjögren's are listed as special requests. Please look for "Special Requests" for these categories.
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E-Pal number 2003-172
Name: Keli
Gender: female
Age: 42
Lives in: Texas, USA
Years with Sjogren's: 6
About Me: Looking for someone who also has multiple system involvement. Any solutions to the severe fatigue? I've been on methotrexate, Enbrel, Plaquenil and multiple other medications. Any advice on how to help my spouse deal with this disease? Thanks
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E-Pal number 2003-137
Name: Evelyn
Gender: female
Age: 48
Lives in: Ohio, USA
Years with Sjogren's: 12
About Me: I was diagnosed officially with Sjogren's in 2001, but have certainly had it for much longer. I originally thought dry eyes and mouth were a nuisance and that my fibro issues were more of a problem. Over the years sjogren's has become much more challenging as it incapacitates me more often with joint and nerve related issues. I have tried various treatments and have settled on an antibiotic regimen which has provided a remission of many of my symptoms. I am a group leader with the Sjogren's Foundation and run a local support group. I still enjoy emailing people individually or in a group format. We all need support. Hoping to talk with some of you. Wishing you wellness. Evelyn
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E-Pal number 2003-129
Name: Cheryl
Gender: female
Age: 50
Lives in: Tennessee, USA
Years with Sjogren's: ? Many
About Me: I'm a teacher and a mother of 3 grown children. I've been married for 31 years. My mother had Sjs also. In addition to Sjs, I have Graves thyroid disease, and I'm in remission for non-Hodgkins lymphoma. I would be happy to hear from other patients with advice or those I might be able to help.
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E-Pal number 2003-126
Name: Ande
Gender: female
Age: 40
Lives in: Tennessee, USA
Years with Sjogren's: 5
About Me: I've had sle for 17 years and Sjogren's for about 5 years. My symptoms of the Sjogren's seems to increasingly worse with each year. I am married with three children. I am 40 and feel like 80. I really feel isolated with this, and how it makes me feel. I am new to this state and would like to meet "like" people with similar problems.
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E-Pal number 2003-125
Name: Helen
Gender: female
Age: 41
Lives in: England
Years with Sjogren's: 6
About Me: Have suffered with SS since the birth of my daughter six years ago. I was only diagnosed a year ago when I forced my GP to refer me to Dr Hughes at St Thomas's Hospital in London. My symptoms include fatigue, muscle and joint pain, gastro problems, interstitial cystitis, livedo, Hughes syndrome and hypothyroidism. One of the most debilitating symptoms is that my legs ache constantly and I would be interested to know if anyone else suffers from this. It does not appear to be a common symptom. I had to give up work at the end of July because the stress made the flare ups more frequent and worse. It would be nice to communicate with someone that understands what I have been and am still going through.
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E-Pal number 2003-098
Name: Diana
Gender: female
Age: 55
Lives in: USA
Years with Sjogren's: several
About Me: I was diagnosed with Sjogren's three years ago, and Fibromyalgia just recently. I am still trying to learn about this frustrating disease. It is so complicated and the symptoms can get so difficult to deal with. Others don't seem to understand what we are going through because we "look fine". I would like an e-pal to compare notes with. It would be nice to be able to share the ups and downs of this disease with someone who has been there, and I am a good listener. I am married and enjoy reading, gardening, and my dog.
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E-Pal number 2003-088
Name: Jim
Gender: male
Age: 36
Lives in: Australia
Years with Sjogren's: 2 years
About Me: I'm Jim from Coffs Harbour, Australia. Around 2 years I was diagnosed with Sjogrens Syndrome, due to the dryness of my mouth and the effect it was having on my teeth. I am also an Epileptic and just prior to being diagnosed with SS spent 10 days undergoing constant testing in Sydney by Epilepsy specialists do find out why I was feeling so tired and forgetful. SS was not even mentioned as a cause. After returning I went to see my dentist to fill an appointment I had to postpone due to my tests in Sydney. He couldn't believe how dry my mouth was and the affect it was having on my teeth. He subsequently told me I had SS. It seems that my testing in Sydney was a waste of time. I would love to swap emails with someone who can empathise with a fellow SS sufferer. Not many people know what we're going through, so get in touch whenever you like. Jim.
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E-Pal number 2003-079
Name: Robyn
Gender: female
Age: 49
Lives in: W.A. Australia
Years with Sjogren's: 2
About Me: I am new to SS although have been diagnosed with a
bone marrow disease (Essential Thromboycthemia) and Discoid Lupus in 1994.
I live in Perth and find it very hard to get a Doctor who knows about SS. Would
love
to hear from others from Australia. I have to daughters 21 and 17 and a partner
who
has helped me with alternative treatment for my other 2 diseases.
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E-Pal number 2003-075
Name: Veronica
Gender: female
Age: 55
Lives in: British Columbia
Years with Sjogren's: 33 years
About Me: Hi, my name is Veronica, and I am 55 and have had SS
symptoms for ever it seems, although I was not diagnosed until early 70's and
have also been diagnosed with Lupus ('96). I live a full and busy life, and have
always had a very positive attitude, but sometimes feel it would help to talk to
other SS patients, especially when faced with occasional seemingly impossible
problems. Right now my teeth and soft tissue are the big issue!
Hope to talk to some of you soon! Veronica
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E-Pal number 2003-068
Name: Elaine
Gender: female
Age: 34
Lives in: Coquitlam, B.C, Canada
Years with Sjogren's: 2+ years
About Me: I was diagnosed with 'Sjogrens' over a year ago but
have had
poor health for a good 10 years.
I have very dry eyes, eye pain, itchy eyes, light sensitive,
swollen glands, fatigue, joint pain, eye allergies too and
swollen eye area, endometriosis, interstitial cystitis, swallowing
trouble and breathing trouble. All these symptoms came on after
a period of stress.
I don't know anyone with this problem and would to have someone
to chat with who can relate. I do allot of my own research
and am constantly trying new things to help improve my health,
such as foods, exercise and supplements. Really hope to find
an e-pal to share stories with.
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E-Pal number 2003-054
Name: Kate
Gender: female
Age: 34
Lives in: Georgia, USA
Years with Sjogren's: 4 years
About Me: Hi I was just diagnosed today (April 16th 2003) & told I have been going for 4yrs undiagnosed - I'm not sure what to make of this diagnosis - I have had a lot of pain for years and am hopeful my rheumatologist and new meds will help- I would like to talk with other who know and/or experience this. Hope to hear from you soon. Kate
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E-Pal number 2003-040
Name: Cathy
Gender: female
Age: 54
Lives in: Maryland, USA
Years with Sjogren's: 2 years
About Me: I am a grandmother with 6 grandchildren. I work part-time and love to travel, read, and gardening. I have problems with fatigue and trying to balance my activities and grandchildren with getting enough rest. I also have frequent flares with more severe dry eyes and mouth and fatigue during these episodes. I would like to hear from others my age and hear how they manage living with this illness and depression from not being able to do what you used to do.
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E-Pal number 2003-039
Name: Angie
Gender: female
Age: 33
Lives in: North Carolina, USA
Years with Sjogren's: 4 years
About Me: I am 33, soon to be 34 years old. I was diagnosed with Sjogren's in Nov. 2002 and started plaquenil. I have not been able to work since I been very ill with the disease over years ago. The plaquenil has resulted in me having improvement over the last few months. My worst symptom is swallowing difficult and pain. My throat often feels swollen and sore, but is better than it was now that I am on plaquenil and evoxac to stimulate saliva. I am very interested in finding an e-pal with the illness and would enjoy writing to that person.
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E-Pal number 2003-026
Name: Janyce
Gender: female
Age: 43
Lives in: Lethbridge, Alberta Canada
Years with Sjogren's: 2 years
About Me: I am a single mom of three, Adam 20, Mark 18 Kim 17. I
have had health problems all my life. Which has impacted the quality of life
with my family.
Twelve years ago I was diagnosed with Celiacs Disease (gluten intolerance).
Two years ago I was admitted to the hospital on New Years Eve with what they
thought was a gall bladder attack. I spent a week in the hospital, but nothing
was found. My family doctor decided to send my to my gastroenterologist in
Calgary AB. He decided to run a whole gamut of blood work. My A.N.A. was
positive. Further test were done by a rheumatologist, who diagnosed me with
Primary Sjogren's Syndrome.
My symptoms include extreme fatigue, which can hit me slowly or it can hit in an
instant. It is as if someone came up and unplug my energy. I have dry eyes, dry
skin, dry nasal lining, unexplained severe abdominal pain, bowel spasms, muscle
fatigue, joint pain , trouble with thyroid, and periodic edema of my hands and
legs.
Submit: Send in Your Want Ad
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