It takes a huge toll on our lives and demands constant attention and monitoring when we are not doing well. Pemphigus patients have done some marvelous things, even while still active with the disease and still taking drugs like Prednisone. While no one wants to push a patient beyond their comfort level, pemphigus is a disease which requires us to test our own limits and adjust accordingly. Support groups are an important resource which cannot be overemphasized. The NPF group members all praise the strength and assistance they find in meeting with people who share the same challenges.
Sharing doubles the joy and cuts the sorrow in half.
The online support group allows almost instant interaction, at any comfort level. There's also great strength in knowing what others have gone through and how they handled the various aspects of treatment. Everyone involved can learn from the exchange. New patients learn what they can expect, while veterans can keep up to date with the changing face of recovery. Caregivers have an independent challenge, one which they themselves can overlook.