Patient Journey: Diagnosis
Welcome to our new story series focusing on the patient journey.
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.
Every week for the next eight weeks, we’re going to highlight a story that focuses on a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize that they are not alone.
Our first story in the Patient Journey Series comes in the form of a letter from Halima:
My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and I went to four different doctors. My primary care doctor told me that I needed to see an ENT specialist. The ENT specialist prescribed prednisone, but it didn’t work. I was told to see a rheumatologist, and they also prescribed prednisone. When that didn’t work, I was referred to an oral surgeon. The oral surgeon performed a biopsy, and I was diagnosed with mucous membrane pemphigoid (MMP).
I wasn’t sure what MMP was and which doctors were able to treat it. I researched and found out that I needed to see a dermatologist. I called at least eight dermatologists in my area, but they did not treat MMP. Some didn’t even know what it was. With my daughter’s help, we found the IPPF online, and I reached out to Becky Strong via email. Becky shared Dr. Ron Feldman’s (Emory University) information with me, and she reached out to him about my case. She followed up with Dr. Feldman and me to see how my treatment was coming along.
Dr. Feldman genuinely cares about his patients. It took almost a year before I was diagnosed, but with the right medications and care, I am on the road to recovery. I wish more doctors were aware of MMP; it would have helped me to receive care earlier.
I am very thankful to the IPPF for their help!
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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