Our fourth story in the Patient Journey Series comes from Dr. Kathleena D’Anna:
When I was first diagnosed with pemphigus vulgaris (PV), I didn’t have the slightest clue what those strange words meant or how this disease would impact my life. The physician who finally diagnosed me handed me a description of the disease and referred me to another doctor, an expert in PV management.
In the meantime, I waited nearly three months to see a specialist, armed with only a vague report on the medically and statistically significant features of PV. I felt alone and confused, feelings only amplified by descriptions that didn’t relate to me at all—I wasn’t even half the age of the individuals typically affected! I had so many questions. What if they got the diagnosis wrong? What could I eat to help heal the sores? What could I do besides take a handful of pills every day?
Your donation helps patients like Kathleena connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.
It was during one of my many internet searches that I came across the IPPF. I couldn’t believe that there was an entire organization dedicated to patient information, and I immediately took advantage of connecting with a peer health coach (PHC). My PHC for the first person to actually tell me, “It’s okay to be scared, everything is going to be okay.” I will never forget those words. They were the reassurance I had been missing and desperately needed. From there I began to realize that I wasn’t alone, that I didn’t need to figure everything out on my own. There were other people who had been through similar experiences to help guide me through this journey.
As I engaged more within the IPPF community, I realized how important and therapeutic it was to share my personal experiences living with PV. Prior to attending Rare Disease Day with the IPPF, I had never told anyone except my close family that I had an autoimmune disease. I hid it away like a dirty secret because I was afraid of appearing weak or being treated differently. Especially as a student of medicine—we are supposed to treat patients, not be them.
When I finally met the members of the IPPF in person—the individuals whose stories I’d read and advice had given me confidence—I decided that I was done denying that part of myself. I am a doctor and a patient. Having PV has made me the person I am today. Rather than being a weakness, it has given me the strength to be wiser and more empathetic. I will use what I’ve learned to teach others, share what I can in both the patient and the medical communities, continue to raise awareness of PV, and elicit change in how people view medical conditions.
Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.
Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.
Check out the rest of the Patient Journey Series:
- Week 1: Halima’s Diagnosis
- Week 2: Rudy Takes Control
- Week 3: Mei Ling Pays It Forward
- Week 4: Kathleena Finds Strength as Both a Patient and a Doctor
- Week 5: Fred’s Perspective: Connecting with Other Patients
- Week 6: Toby’s Luck