I was diagnosed with SLE when I was 15, I'm 19 now and I get flares like twice a year. I was diagnosed with Sjögren's syndrome too a few weeks ago. This year has been pretty bad, worst of my years of experience- not so much physically but mentally. I've never been comfortable talking openly about lupus but I've finally decided to post here and I'm feeling good about it.
SLE with Sjögren's syndrome - LUpus Patients Un...
SLE with Sjögren's syndrome
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
You should be proud because it takes courage to talk about your vulnerability.
Please know you can contact me at any time.
We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.
Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.
Please go to: lupus-support.org/LuPUSMB and Sign Up where there is a great deal of information. It is regularly updated with the latest articles and news. There is a separate section on Sjogren's Syndrome too.
I look forward to talking with you more!
Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
I forgot to mention that I have probably had lupus most of my life. My first major flare was when I was 17 years old. It took many, many years (into my 30s) before I was diagnosed!
It is very difficult having a chronic disease, especially when young and all your friends are at university, going to parties etc
I hope you have a good support system from family and friends.
I also hope you have a good lupus specialist.
Perhaps you would like to say more about yourself?
With good wishes,
Ros