The story of Molly
One month ago today I received the call. I immediately took note of the time 5:32pm, noticing it odd for a doctor’s office to call so late. “You did an excellent job diagnosing yourself. The biopsy results are conclusive as Pemphigus Vulgaris.”
Additional words spilled from her lips, however I found myself already floating away. It was a strange concoction of relief and reality. Relief in the sense that my 10+ month journey to a proper diagnosis was now complete. Reality in that it was no longer guesses and possibilities, but a living, breathing, disease.
When Dr. Alexandra Theriault called, we were on our way out the door, packed and loaded for a weekend trip to the mountains. I was able to process and talk through these new thoughts on the 2-hour ride. As I chatted with my husband, Chris, I remember the rise and fall of various emotions. The oddest of them was this general feeling of being uncomfortable in my own skin. This was new to me and exhibited in a sort of squirmy feeling, wanting to shake it all “off.” 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. Why did this happen? What now?
In the weeks leading up to diagnosis day, I had begun to narrow down the options of what I could potentially have. I was fairly certain it was Pemphigus Vulgaris (PV for short,) based on what I’d seen, but a biopsy remained. I encountered plenty of online material that concerned me. Words I had never identified with previously were popping up; autoimmune disease, rare, incurable, chronic, flare, remission, mortality rate. Up until this, my bill health had always been solid. Not even so much as a cavity. Now I was entering into a world that included truckloads of unknowns and with that, fear.
It all started with some loose skin. I’d eaten something and noticed pain and soreness just under one of my bottom teeth. As time went on, I noticed it wasn’t healing. My gums started to regularly bleed when brushing and additional skin started to come loose. I had redness around my teeth and noticed larger spaces between the teeth and gums. I would occasionally find “bubbles” on the sides of my mouth. Round, smooth blisters that came and went. Over the months, the sores or “lesions” would progress, shifting from around my teeth to the base of my gum line. I could visibly see the white loose skin and noticed after every meal the skin shifted, and new areas of pain would surface. In recent months, blisters appeared on my body. First my back, then stomach. The back lesion was already open and extremely raw and sensitive to the touch. The stomach lesion was found in tact and appeared as a dime-sized, clear-fluid blister. Both spots are taking months to heal. My mouth lesions seem to be finding new areas, as I’m now finding them under and on the sides of my tongue as well as the esophagus and upper gum line.
In the time all of this occurred, I saw two dentists, one oral surgeon, two dermatologists and one general practitioner. It was misdiagnosed as a “herpetic outbreak” twice, as well as speculations of it being lupus and hormone imbalances. I had CBC with differential blood panels as well as an ANA panel. Nothing found. I went through two rounds of antibiotics, topical and systemic steroids as well as medicines to treat herpes, all with little relief. Thankfully, after seeing the same dentist — Dr. Larry O’Neill, for 7 weeks straight, he remembered a case he had seen 30 years ago while practicing in the Army. He wrote down two names”Lichen Planus” and “Pemphigus Vulgaris,” and advised me to have a direct immunofluorescence biopsy performed.
I immediately took to researching the two diseases. As I googled PV, I came across www.pemphigus.org. The Pemphigus Foundations site is and was a godsend. It was there that I saw a patient video that spoke to me. This video featured Becky, who told her story to diagnosis. I watched it and immediately told Chris – “I’m 90% sure this is what I have.” Her story was almost identical to mine. Through the foundation, I was able to obtain a list of Dr.’s who have experience diagnosing and treating this disease. Due to its rarity, most Dr.’s don’t recognize it when they see it. I called three of the Dr.’s and luckily was able to get an appointment within three days. At the appointment, she performed the specific biopsy needed. I also requested the enzyme-linked immunoabsorbent assay (ELISA) blood test, which would further test for PV.
10 months, 6 doctors, 10+ appointments and 5 drug prescriptions later… I was thankfully and correctly, diagnosed.
So, here I am one month later. I’m currently on a mild treatment plan (doxycycline and nicotinic acid,) with the thought being we would try a milder route and then move to the “big guns,” (as she called them) if need be.
I’m also putting to use my education received from the Institute for Integrative Nutrition. In 2012, I graduated as a Certified Holistic Health Coach. I also became board certified with the American Association of Drugless Practitioners. I have access to over 100 dietary theories and as well as teachings from top doctors in the nutrition and wellness fields. I’ll be pulling on this education more than ever as I hope to further my healing using a well-rounded approach.
Pemphigus and Pemphigoid are considered rare diseases. Because of this, sometimes I feel a touch isolated or different. 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.
My greatest wish is to create an integrative approach to managing PV. One that not only uses traditional medicine, but includes holistic practices such as nutrition and heightened self-care.
This diagnosis is an opportunity to learn, grow and heal and I thank you for being a part of that with me.
Here’s to Healing,
Molly
P.S. Visit www.mollylafata.com for additional articles and to connect with me.
Meet others who understand on the international pemphigus and pemphigoid community: https://www.rareconnect.org/en/community/pemphigus-and-pemphigoid