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Which advice would you give to someone who has just been diagnosed with Behcet Syndrome?
Advice for the newly diagnosed with Behcet Syndrome, written by people who have lived it. What they wish they had known on day one.
Connect with a Rheumatogist who you feel you can trust and communicate with openly about the best possible treatment of your specific Behcets symptoms. I went to see 2 other Rheumatologists to confirm my diagnosis, and weigh in about treatment options, but this may not be necessary or even an option for a number of individuals diagnosed with Behcets. It might have been helpful to connect with others with Behcets. This was not as much of an option when I was diagnosed in ~2004.
Posted Apr 28, 2017 by bleach 1000
Don't think it's the end of the world because you read or heard it's incurable. You are not alone.
Posted Sep 17, 2017 by Carole-Anne Halsey 2000
I tell the truth it is pointless sugar coating it
Posted Oct 24, 2017 by Linda Egan 1500
Breath, take time to process it, and allow yourself the time to grieve. Learning you have Behcet's is hard. It seems like having an answer for your unique and horrible symptoms will make everything easier. It does for five minutes. Then the reality of what you are facing sets in. You have to focus on allowing yourself and your family to get used to the diagnosis. Grieve for what was, prepare to fight, and get ready to learn how to live with your disease but becoming informed. Information is your best friend. Become your own best advocate.
Posted Jan 11, 2022 by Leah 900
Find resources and do not be afraid to get involved. There is help to be found in this disease and you've gotten through one of the hardest parts, the diagnosis. If you've got this far you've got this. Knowing what it is making you miserable makes it so much easier to treat and make better.
Posted Mar 15, 2022 by RonnieJ 3350
A lot of people are upset when they're diagnosed. I always tell them that a label doesn't make them sicker than they were the previous day. What it does, is it gives us knowledge which is power. With that, we know how to properly treat the drug.
For most of us, we also get the satisfaction of telling everyone, "I told you I was sick" because they've told us we were faking illness for years and don't look sick. What does sick look like?
I would also say that steriods are called Satan's Tic Tacs for a reason.
For most of us, we also get the satisfaction of telling everyone, "I told you I was sick" because they've told us we were faking illness for years and don't look sick. What does sick look like?
I would also say that steriods are called Satan's Tic Tacs for a reason.
Posted Mar 16, 2022 by Shelby 2750
Translated from spanish
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Don't be scared off. To investigate the disease, talk with other people with behçet's
Posted Sep 17, 2017 by Salvador 2000
