On the last day of February millions of people around the world will observe Rare Disease Day. Get involved by visiting the U.S. (www.rarediseaseday.us) or global (www.rarediseaseday.org) Rare Disease Day website before February 29 to learn about events in your area and what you can do.
The First Amendment to the United States Constitution guarantees the right of all citizens to communicate with their elected officials. So you might be asking yourself, “Does my Congressional Representative really care what I think”? Well, the answer is YES!
If you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as . . .
At the IPPF, we have found that our regional support groups greatly help P/P patients’ and caregivers’ well-being. The value of social support while living with P/P in immeasurable.
When the email landed in my inbox last month asking for pemphigus and pemphigoid patients and caregivers to advocate on Capitol Hill, I didn’t hesitate.
Recently, the Awareness Campaign was an exhibitor at the American Dental Association’s (ADA) Annual Meeting in Washington, DC from 11/5-11/10 and the Greater New York Dental Meeting (GNYDM) from 11/29-12/2. Campaign staff and volunteers connected with over 600 dental professionals at each meeting, handing out brochures and post cards specifically designed to help these dental professionals recognize P/P symptoms.
For those of you who have any one of the pemphigus/pemphigoid (P/P) related skin diseases, stress is the number one factor in flare-ups occurring. The mind-body connection is very strong and stress encourages the antibodies to act up and give you more blisters.
I am neither brave nor eloquent with words but the knowledge that I could encourage the passage of bills to find cures or treatments for people all over the world was inspiring. I quickly found my courage and knew my purpose.