imageBy Patrick Dunn

For Molly LaFata, the path to a pemphigus vulgaris (PV) diagnosis involved over 10 months of rotating doctors, frustrating misdiagnoses, and unnecessary drugs. Molly’s journey began in early 2014 when she noticed loose skin and pain under one of her bottom teeth. As time went on, her gums began to bleed regularly. The loose skin and blisters became lesions that progressed around her teeth and the base of her gums. After every meal, the skin shifted, causing new areas of pain. Eventually, Molly’s lesions spread to her upper gum line, her esophagus, and the sides of her tongue. The blisters also spread to Molly’s back and stomach. On her back, the lesion opened and was extremely sensitive.

While trying to manage her symptoms, Molly saw two dentists, one oral surgeon, two dermatologists, and one general practitioner. She was misdiagnosed twice as having herpetic outbreaks, and there was speculation of her having lupus and hormone imbalances. She had multiple blood panels performed, and she was treated with topical and systemic steroids, two rounds of antibiotics, and herpes medication. All of this provided little relief, until one of Molly’s dentists remembered a case he had seen 30 years prior while practicing in the Army. He wrote down two possibilities—lichen planus and pemphigus vulgaris—and advised Molly to have a direct immunofluorescence biopsy performed.

At home, Molly researched both diseases. An internet search for “pemphigus vulgaris” led her to the IPPF website. “The Pemphigus Foundations site is and was a godsend,” Molly said. “It was there that I saw a patient video that spoke to me.” This video featured Becky Strong, an IPPF Patient Educator. The video detailed Becky’s diagnosis process, which was very similar to Molly’s experience.

After viewing the video, Molly contacted the IPPF and obtained a list of doctors with experience diagnosing and treating PV. Three days later, Molly had a biopsy and enzyme-linked immunoabsorbant assay performed. Soon after, on January 7, 2015, she received a call that the biopsy results were conclusive. She had PV.

Molly said that she felt “a strange concoction of relief and reality” when she received her diagnosis. “Relief in the sense that my ten-plus month journey to a proper diagnosis was now complete. Reality in that it was no longer guesses and possibilities, but a living, breathing, disease.”

Molly lives with her husband, Chris, and their two daughters in Colorado. They were leaving for a weekend trip to the mountains when Molly got her diagnosis call. She spent the two-hour drive trying to process the new information. “I remember the rise and fall of emotions,” she said. “The oddest of them was this general feeling of being uncomfortable in my own skin…. My body had turned on me, and waves of anger came and went, followed by feelings of softness and sadness. I felt fragile and unsure.”

Focused on healing, Molly began blogging about her PV experience at in February of this year. She will also be contributing to the IPPF website in the future. “I’m hoping that by writing and sharing my experiences publicly, I’ll attract and connect with others who share this ‘special disease’ with me. In a sense, I’d like to make the world feel smaller. I’d also like to be a resource for anyone looking for answers in determining if they too have PV.”

Unfortunately, Molly’s story of delayed diagnosis is similar to what most pemphigus and pemphigoid patients experience. Because of this, the IPPF Awareness Campaign was created with the goal of improving the quality of life of P/P patients through early diagnosis. As Molly’s story illustrates, dental professionals have a unique opportunity to shorten diagnosis times. For this reason, the Awareness Campaign encourages dental professionals to “Put It On Your Radar.”

5 thoughts on “Delayed Diagnosis: Molly LaFata

  1. I was very lucky. In a small jurisdiction like Gibraltar, with a population of only 30k inhabitants, I was diagnosed within weeks. I first went to see a GP, she prescribed antibiotics and said to return after a week if I had not recovered. A week later she admitted she had no idea and sent me to see a dental surgeon, he too had no idea and asked me to return a week later in order to see how the condition had developed. When I returned he was convinced I was suffering from either Pemphigus or Pemphigoid, he sent a biopsy to a United Kingdom laboratory and very shortly I had the diagnosis, PV.
    I have now been suffering with the condition for the past 14 years, however, I have been in remission for some considerable time and currently take 50mg of Azathioprine.

    • Thanks for sharing, Richard. It’s good to hear how quickly you were diagnosed. We talk to so many patients, like Molly, who struggle for months or even years to find out what’s happening. It sounds like you have a great GP/dental surgeon combination.

  2. Mine went from Melanoma to PV. I was sent to McCleod Medical Center in Florence, SC where specialists could better help me. At this point I had suffered and my body slowly decaying after 4 years. That’s when the nightmare of rotating doctors with wild claims of Menegitus>Tuberculosis before they finally settled on full blown AIDS. What about my PV?

    “You never had Pemphigus Vulgaris It doesn’t exist. It’s a medical myth that needs to be removed from all the text books.” Their powerful medicines mixed up inside me like a deadly cocktail and after Renal Fairure and Diabetetic Shock. My heart finally gave out and I was all but pronounce dead when I began a pulse again. This happened twice and I was being slowly tortured and killed by the arrogance of the medical specialists who where thought to be my only hope.

    Today, only one year later, I’m enjoying the bright sun again as I’ve had no signs or traces of PV and I take no more medicine. Isn’t that the definition of a cure, or is the madness and arrogance of doctors too strong to admit it so they call it remission. If that’s the mindset of events, then I must have cured all those and more which any one of them is incurable, or so it has become a reality.

    I’m living proof that a cure is already here. Something in my DNA has unlocked something that researchers are now starting to recognize. I’m 100% sure the cure for all lies within.

    I too am publishing a book that I’ve already written but the final chapter has come to pass.

    “My Name Is Will Shooter, and I am a P.V, Survivor”

  3. So glad you got you got a diagnosis, the name of our condition alone is a relief. It’s the not knowing that frightens us.
    I suffered 4 years, now with the grace of God and my dermatologist I am now healing.
    I am once again again a productive member of my family, friends and society as we know it.
    I wish you all the best and with the support of IPPF we will get through this for we are not alone.

  4. Good to read stories with a positive endings.
    My daughter was also diagnosed with P.V in 2007. With a Doctor who knew nothing of PV but a lot of Autoimmune diseases, looked after her nutritionally as well as the usual drugs regime.
    Today she is off gluten , nightshade vegetables and still on Imuran daily.
    I’m grateful everyday for her present health and the practictioners who are looking after her.
    She is a PV survivor.

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