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The Unknown

By Anonymous May 22, 2011 - 7:40pm
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How do you handle the unknown of a disease? I have Limited Wegner's just getting over a flare. the Unknown is so hard for me to handle emotionally.

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I am sorry you are going through this, but happy that you found EmpowHER! We are here to help.

You can find great information about Wegener's Granulomatosis (WG) in general with the following website links, as well as find online support and encouragement by connecting with other women. You can start your own group at EmpowHER if you would like to begin the conversation with other women who are diagnosed with an autoimmune disease (or any other condition whose cause is unknown).

To answer your question about the "unknown": it is difficult, and sharing your struggles with loved ones who understand you, as well as sharing your struggles with other women who understand your disease, can help tremendously. Keeping track of your symptoms, as well as keeping up-to-date on most recent news, discoveries, clinical trials, treatment options and other information can help you become an empowered patient (the more emotional support you have, plus the more you KNOW, the more you can emotionally cope with the UNknown).

- EmpowHER: Wegener's Granulomatosis: better prognosis now

- Vasculitis Foundation: Wegener's Granulomatosis

- EmpowHER Conditions: Wegener's Granulomatosis

- American Autoimmunity: Coping with Autoimmunity

I hope some of these resources help, and please let us know if you need help starting a Discussion Group at EmpowHER (a few sites above also have online support for patients, as well as patient stories).

Please let us know what you think about these resources, and how we can help!

May 22, 2011 - 7:28pm
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