Carolyn’s Story -Pemphigoid Awareness at DNA 2019

If you haven’t heard of bullous pemphigoid, you’re not alone, the condition isn’t typically well known even by physicians. For those living with it, this tends to mean a long, painful journey to a diagnosis.

Carolyn Fota, a retired U.S. Army Medical Service Officer who lives with bullous pemphigoid, recently spoke at the Dermatology Nurses’ Association Convention to help increase awareness of the condition.

Carolyn stated that the average patient with pemphigoid sees five doctors over the course of ten months before being correctly diagnosed. She herself, saw two dozen doctors over five months before her own diagnosis.

An early diagnosis tends to lead to a better quality of life and can help patients avoid serious complications down the road.

The all too common delay in diagnosis can lead to complications and hospitalizations.

This experience is one Carolyn knows all too well.

Her symptoms began after a surgery and she initially dismissed the pain she felt in her mouth and throat as airway irritation post anesthesia.

Blisters formed in her mouth and her doctor told her it was from stress.

Her dentist told her she must be brushing her teeth too hard.

Then, the blisters began to spread to her body.

She was told she had chicken pox, and then shingles. She was tested for HIV and for cancer. Eventually she was given steroids and released from the hospital.

Shortly thereafter, she, like many untreated pemphigoid patients, developed an infection, which then resulted in sepsis-a potentially life-threatening complication.

Carolyn vividly remembers the day she finally received her diagnosis.  She already had bullous pemphigoid on  her mind. When her doctor confirmed the diagnosis, she became the first patient with it that he had ever seen, let alone treat. Despite this, Carolyn felt confident with the medical staff.  Her care was well-researched, comprehensive, ,  collaborative, and she is grateful to her dedicated team.

As a patient, she did her part by diligently keeping a log of her symptoms. She recorded the state of her condition daily, taking pictures, and communicating frequently with her nurses.

Carolyn and her husband

Carolyn researched and discovered, the International Pemphigus and Pemphigoid Foundation and learned she was not alone in her battle.

With a diagnosis, a good healthcare team, her own records of progress, and a new community, Carolyn says she went from being “A sick patient, to a resilient patient, to a thriving patient.”

Today, Carolyn is in remission.

Her speech at the DNA Convention emphasized the importance of receiving interdisciplinary, comprehensive care, and creating a dynamic partnership  with healthcare professionals.

She detailed other types of pemphigoid for the audience, stating “pemphigoid can be experienced at any age and though it sometimes can self-resolve, it should always be taken seriously.”

She cautioned that Mucous Membrane Pemphigoid can leave scarring that can cause serious complications in the eyes and throat, and that Pemphigus Vulgaris results in such fragile skin in which  eating can become incredibly difficult- resulting in weight loss and dehydration.

Carolyn’s presentation emphasized that; “Often pemphigoid patients are hard to identify, hard to diagnose, delayed in receiving a diagnosis, and experience complications and hospitalizations.”

She brought heightened awareness to the spectrum of conditions, and concluded with an expression of gratitude.

Addressing all the nurses in the audience, Carolyn offered a heartfelt “thank you.”

‏‏ “You are the heroes to those of us who have suffered. You are our hope.””

If you or somebody you know might have pemphigus or pemphigoid, please contact the IPPF at http://www.pemphigus.org/


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