Unite our Global Community: Rob’s Story
This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.
If someone with a rare disease can consider themselves lucky, I am lucky to have found the IPPF and the annual Patient Education Conference only a few weeks after being diagnosed with pemphigus vulgaris (PV). The 2020 conference made a huge difference in my quality of life. The conference came at a critical point during my initial treatment and helped me understand my diagnosis and how to care for my mouth and skin. Most importantly, I heard from expert physicians about treatment options, including steroid sparing medications. The knowledge I gained from the conference allowed me to advocate for myself and make educated treatment decisions with my doctors.
I’ve continued to actively participate in the IPPF Patient Education Webinars. These webinars are an amazing opportunity to learn about PV and to pose questions to national experts. I even found my current dermatologist from one of these webinars. The webinars also cover important topics related to living with an autoimmune disease. The IPPF’s coverage of Covid and the updates provided on clinical research have been especially valuable. I also appreciate the advocacy that IPPF does on Capitol Hill for our conditions. Raising awareness with legislators and agencies, like the FDA, is critical for improving our lives and treatment options.
The IPPF has made a big difference in my life and managing my PV. I am grateful for the work it does, and I am proud to make donations to support this work.
Our mission is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join Rob and donate to the IPPF to help us ensure that our patient support programs are available to all those who need them today, tomorrow, and for years to come.
Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.