If you or your loved one has a confirmed diagnosis of BP and would like to connect with Dr. Adotama and his research, please click here.

By Gina DeMillo Wagner

When it comes to complex, rare diseases, most people don’t think “dermatology.” But they should, says Prince Adotama, MD, a board-certified dermatologist and faculty member at NYU. Dr. Adotama specializes in skin of color care and skin autoimmune disorders, including rare bullous disorders. So, he’s seen how complex disease can manifest in our body’s largest organ.

“A lot of internal diseases present in the skin,” notes Dr. Adotama. Too often, he notes, when patients notice a rash, blisters, or other problems with their skin, they visit their primary care doctor or an urgent care center. There, they might receive a prescription for prednisone, a powerful steroid medication. “It’s a quick fix, not a long-term solution,” he explains. Prednisone treats inflammation and rashes, but it has several unwanted side effects. And, it fails to treat the underlying causes of the skin disorder. So, the problem often comes back.

That’s one of the reasons Dr. Adotama says he became interested in dermatology. “I’m interested in advanced, complex diseases that don’t have a lot of treatments available,” he says. Dr. Adotama was first introduced to dermatology as a high school student, when he shadowed a doctor to learn more about medicine. He was paired with a dermatologist and was amazed to see everything the dermatologist could do. “He was a jack of all trades,” he explains. The dermatologist saw patients of all ages, performed surgery, screened for cancer, treated complex diseases, offered cosmetic treatment—you name it. It was a specialty that had a huge impact on patients’ lives. From that moment on, he knew what he wanted to pursue. “I shadowed other doctors and thought, ‘oh this doesn’t compare.’”

Hope for Rare Skin Disorders

Skin conditions can impact quality of life, but patients need not despair. “The horizon for treatments is growing,” Dr. Adotama says. “I enjoy instilling hope in patients whose skin disorders can feel devastating.” 

Some of the research developments he’s most excited about are emerging treatments that allow patients to administer injectables at home. Right now, many treatments require regular visits to infusion centers, he notes. This is time consuming and inaccessible for patients who don’t have transportation or job flexibility to take off work. Receiving medication at home increases accessibility, makes it easier for insurance to cover the cost, and offers potentially fewer side effects.

Dr. Adotama is currently researching new treatments for bullous disorders (autoimmune disorders that result in blisters) and is optimistic about clinical studies that will allow for hybrid care, meaning that patients can be treated at home as well as in a clinical setting, allowing them to save money, reduce travel time, and receive close monitoring in a familiar environment. 

If you or someone you know is facing a rare skin disorder, Dr. Adotama offers the following advice:

1. If it’s affecting your skin, visit a dermatologist first. Patients can live their whole lives without ever seeing a dermatologist. It’s not one of the “required” visits we make as adults, like primary care, OB/GYNs, or even dentists. Yet, if you have a skin issue, it’s smart to visit a dermatologist who can diagnose and treat the underlying cause (not just the symptoms). Seeing a dermatologist first can dramatically reduce the timeline from symptoms to diagnosis, he notes.

2. If you’re not noticing improvement, seek a second opinion. “No one is going to care about you as much as you do,” Dr. Adotama notes. If you’re feeling stuck or not seeing the progress you hoped, advocate for yourself and seek another opinion. Take ownership of your care, he suggests.

3. Keep detailed records. Likewise, he suggests tracking your disease and treatment journey with a detailed history, medical records, and notes. Bring all your documents to your appointments so that you and your doctor can see the complete picture, he advises. Biopsies are especially useful for any sort of blistering disorder, he says. If you have previous skin biopsy results, even if they’re old, bring them with you. 

4. Take advantage of support groups. Whether it’s through social media, virtual groups, or in-person meetings—the validation, empathy and wisdom you gain from peer support is extremely valuable. It helps to alleviate fear and feelings of isolation, he says, as well as gaining firsthand knowledge that can lead to breakthroughs for patients. 

5. Let your doctors know if you’re interested in clinical trials. Open communication is one of the best ways to advocate for yourself and gain access to new treatments, Dr. Adotama suggests. As the saying goes, “a closed mouth won’t get fed.” That includes speaking up about any concerns you might have. “There’s no such thing as a treatment with zero side effects,” he notes. Even ibuprofen and herbal supplements have side effects. But with the newer treatments being developed, Dr. Adotama says, there are potentially fewer side effects. And those side effects are often much more tolerable than the disease itself.

To learn more about Dr. Adotama’s research, click here.

For more information about skin disorders, to chat with rare allies, journal about your experiences, or to find a clinical study, visit Know Rare’s new community platform.

If you or your loved one has a confirmed diagnosis of BP and would like to connect with Dr. Adotama and his research, please fill out this form: