SPONSORED BY SANOFI-REGENERON
Presented By Nick Taylor. Director, Lead, US Public Affairs & Patient Advocacy Sanofi
Dr. Margaret Alabi, Director, US & Global Patient Advocacy
Elise, Prurigo Nodularis Patient Advocate
Dr. Margaret Alabi, Director of US & Global Patient Advocacy, led a discussion with Nick Taylor, Director Lead of US Public Affairs & Patient Advocacy Sanofi, and Elise, a Prurigo Nodularis Patient Advocate, discussed what it is like to live with prurigo nodularis at the Black Health Matters Spring Summit.
“This chronic skin disorder is marked by the emergence of itchy hard nodules that can cover vast areas of the skin, leading not only to physical discomfort but also significant psychological distress. The itching is relentless, sometimes worsening at night, making it difficult for sufferers to find relief,” said Taylor.
“This conversation is about empathy support and the collective effort to bring awareness and visibility to Stories like Elise’s,” said Dr. Alabi. “By sharing these experiences, we aim to build Bridges of compassion and understanding for this condition and hopefully. Create an encouraging and supportive community that recognizes the depth of the impact of prurigo nodularis on the lives of the persons who navigate this condition daily.”
Elise initially thought her prurigo nodularis was something else. “The summer of 2014. I had what resembled a mosquito bite. So, I did what I would normally do to treat a mosquito bite,” she said. “But from that one bump, It eventually LED and spread to more bumps forming; it just wasn’t getting better. Eventually, it spread down my arm to the next arm, spread from my legs, and all the way up my back. So it was all over my body.” Aloe and lotions failed to offer her relief, so she sought medical care.
There would be a significant time until she got answers. “The first dermatologist I went to probably took two minutes with me. Literally two minutes, he looked at my skin, and he told me I had scabies,” she said. Her training as an esthetician helped her reject that inaccurate diagnosis. She knew what scabies looked like because she had studied it. The doctor was wrong.
The misdiagnoses continued, as did the unbearable itching caused by the condition. She turned to hairbrushes to try and calm the discomfort as doctors fumbled her case.
“It continued to spread, and on the third visit, he told me I had dermatitis. So I’m like, okay, we’re not getting anywhere,” she said. Her journey continued through a path of more misinformation.
“Took a little break and went to another dermatologist. He diagnosed me with keratosis pilaris, and that was getting nowhere. So I went to another dermatologist, they said I had eczema,” she said.
“I found it difficult to find a specialist, not only one familiar with prurigo nodularis but one who dealt with a diagnosis like mine,” Elise continued. “So I didn’t receive my prurigo nodularis diagnosis until about three years later.”
The doctor she found in 2017 tested her skin instead of spewing a diagnosis after a sideways glance. “The first time I visited her. She said, okay, let’s do a biopsy,” said Elise. “Why didn’t anybody else do this? We could have cut out three years of me searching, and it’s spreading.”
She revealed how the visibility of the disease was one of the most upsetting aspects. “I don’t want to show off my skin. I don’t want to be seen as disgusting or [have] people. Looking at me weird,” she said.
Her coworkers tried to offer her encouragement, but they could not relate to her feelings, as she had lived into adulthood without this condition and now had to deal with its constant presence.
Elise explained how the average person’s lack of a reference point about her condition impacted her workplace. “I remember just a couple instances where I had clients that were uncomfortable with me touching them, and I had to reassure them I had to reassure them. I’m not contagious,” she said.
“Having this skin condition just reaffirmed as a human race that we need to treat people how we want to be treated. Put yourself in my shoes if you can, and try to people treat people a little bit more kindly.”
Elise finds comfort in a community like many people with chronic conditions. “Knowing that I’m not alone and that I have somebody walking in my shoes, it does help a little bit because I can talk with them,” she said.
