Connecting Virtually at the South Florida Support Group Daphna Smolka
I
will always remember the feeling when I was first diagnosed. The confusion and disbelief were soon replaced by feeling alone and overwhelmed. Luckily, I discovered the IPPF and its website, which provides access to so much information. I have been sifting through that information ever since I was diagnosed. Attending the annual Patient Education Conferences (seven so far) and being active in my local support group meetings have helped me change my perspective about this disease. When first diagnosed, I accepted that I had a rare disease and spent my time researching and learning, but in a vacuum. Fortunately, Nancy Corinella felt motivated to start the South Florida Support Group in 2014. The first meeting was in her home, and three of us showed up. Since then, the group has grown and welcomed numerous patients and caregivers to our meetings. I am always amazed at the number of newly diagnosed patients who find us. The opportunity to meet with other patients dealing with similar challenges is such a relief. More than once, I have felt a burden lifting when another patient can share their experiences with me. Sadly, our March 2020 meeting was canceled at the last minute due to COVID-19. I was disappointed that
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Quarterly | Fall 2020
I wouldn’t have the chance to catch up with the regular attendees, and I was sorry that I wouldn’t be able to meet with some newly diagnosed families in person after several phone calls. The worst part was that it happened so suddenly, and we had to cancel the already long overdue meeting. When newly diagnosed patients reach out to us and attend a support group meeting, it provides a profound comfort that cannot be given through a phone call or text message. Experiencing the lockdown and all of the unknowns of the pandemic has created many stressors for pemphigus and pemphigoid (P/P) patients. Pivoting to a virtual platform meeting in June felt like the least we could do to keep the group connected. Luckily, Mindy Zimmerman has stepped up and been the most incredible host. I know that shifting gears and mastering technology is not for everyone. We do have some members who struggle with the technology, and we are working to find a solution. Part of the benefit of
www.pemphigus.org
