A Caregiver’s Perspective
Pat Tapler
T
his story is all too familiar. My husband woke up with a severe sore throat one day that progressed to sores in his mouth, all over his body, and on his scalp. Eating was painful, and the area on his scalp grew larger every day. We began visiting doctors, which grew to five dermatologists, an internist, a dentist, a urologist, and a colon and rectal surgeon. About a year later, he was diagnosed with pemphigus vulgaris (PV). Though the internet search that followed was revealing, it was not encouraging in terms of disease progression. We learned about the medications used to treat PV and the many relevant concerns while taking them. Various medications were prescribed, but nothing worked. The daily reminder of pain and other
physical symptoms was not improving our ability to cope. Depression was also something we faced now and then. Of course, our lives had changed in a way we had never experienced, and we didn’t know how to deal with it. As a caregiver I experienced anxiety, uncertainty, and feelings of complete helplessness.
Though the internet search that followed was revealing, it was not encouraging in terms of disease progression.
18
Quarterly | Summer 2018
We started looking at the IPPF and what it offered. We found people who had already been through this and were willing to share their knowledge. Through them, we finally found a dermatologist who knew how to treat the type of PV my husband has. This resulted
www.pemphigus.org
