There have been two key challenges to raising awareness and funds about the devastating effects of pemphigus/pemphigoid — to front-line medical professionals, donors, and corporate sponsors. In the early stages people tell me they feel ashamed, embarrassed, and frustrated when they explain this disease to others. A very courageous and accomplished woman said to me recently, No one here who knows me knows that I have this disease.
The other challenge is that once people have achieved a level of maintenance, or even remission, they no longer want to reflect on some of the darkest and most terrifying days of their life.
And yet, telling these stories is probably the most powerful way to move people to action and inspire people to support the development of resources, information, and perhaps even cures. Récemment, people are speaking up about these trying times, and reaching out to educate others or to extend a helping hand to those just beginning this horrific journey.
If you haven’t yet, please take the time to go to our web site at www.pemphigus.org/makeadifference and listen to Rebecca’s interview with Richard Cohen on WABC.
Opportunities like this national radio broadcast, stories in local newspapers, and presentations to relevant groups such as dermatologists and dentists help us spread awareness, and make an early and effective diagnosis of P/P possible. {quotes align=right}Personal stories also raise awareness of philanthropists and good social citizens who want to make a difference for people who are suffering.{/quotes}
Since I have been a part of the IPPF, many people have shared with me their stories of tragedies and triumph. These stories provide the incentive and the inspiration for donors, corporate citizens, and medical professionals to work to make a difference.
We thank all of the courageous people, such as Rebecca, who share their stories in order to help others, and honor those who suffer with P/P alone, or in silence.
