Patient Experience Week: A Celebration of the Warrior Spirit

Patient Experience Week: A Celebration of the Warrior Spirit

Written by Ashlee Hartger with contributions from Kimberly Bregger

 

 

Rare Disease

We’ve all been a patient in some capacity. Whether it be an annual check-up with our primary care physician, or an emergency trip to the urgent care for an ankle sprain, most of us have had the similar experience of anxiously sitting in a beige-walled waiting room, impatiently flipping through year-old versions of People magazine and completing crossword puzzles with dimly erased letters peering through each box. It has become a rite of passage. But for some, the experience of being a patient isn’t a traditional one. For those who suffer from chronic illness, or a rare disease, it is riddled with uncertainty, questions, research, anxiety, and advocacy. I had the opportunity to speak with a spectacular human who has spent much of her life educating others on what life as a patient with a rare disease looks like. Her story is inspirational.

Kimberly Grace defines herself as many things – wife, mother, business-owner, entrepreneur, musician, photographer, and novice foodie. There is one word, however, that she does not tout in her role repertoire – patient.

 Ichthyosis

Kim was born with ichthyosis, a rare genetic skin disease described by the Foundation for Ichthyosis & Related Skin Types as “dry, scaling skin that may be thickened or very thin.”  According to the National Organization for Rare Disorders, “Ichthyosis is an incurable gene mutation that causes severe flakiness of the skin. In some forms of ichthyosis, skin cells are produced at a natural rate, but do not separate normally at the surface of the outermost layer of skin, and do not shed as quickly as they should. In other forms, there is an overproduction of skin cells in the epidermis. These cells reach the stratum corneum in as few as 4 days, compared to the normal 14 days. When new cells are made faster than the old cells are shed, it causes a buildup in the stratum corneum and underlying layers. The result in both instances is a buildup of scale.”

Born covered in a parchment-like membrane called a collodion membrane, Kim’s doctors informed her mother that, if she did survive, she was unlikely to lead a normal life. Never one to be hindered by limitations, Kim began to defy doctors’ expectations – testing in the normal to advanced ranges both cognitively and developmentally. Still, it took time to determine a diagnosis for her rapid production of skin, and to adapt to a condition that set her apart from her peers.

“I always knew I was different, but from a very young age I was fortunate to have access to resources and education on my disorder. My incredible parents were able to find a dermatologist in our area who specialized in ichthyosis (a very rare specialty), and we attended conferences that helped better our understanding on how to manage it. My family has always been strong in the belief that we are not victims of our circumstances. Knowing that I’m in control of what defines me has always been a point of strength in my life.”

Living with Ichthyosis

This optimistic spirit radiates through every aspect of Kim’s life; from her relationship with her husband Jordan, to her giggle-infused tickle fights with her 2-year-old son, Nixon. That’s not to say that she doesn’t experience more than her fair share of obstacles. Like many who suffer from a rare disease, the lack of awareness can be disheartening. When her regular dermatologist moved out of state, Kim attempted to find a replacement. “Having to advocate for myself as a patient was frustrating. Some physicians are very open to understanding something they don’t see on a regular basis, but there are others who assume that I’m someone who spends too much time on WebMD.” After explaining the symptoms of ichthyosis to multiple physicians and ensuring them that their new diagnosis of “just eczema” was incorrect, she gave up fighting and settled for making her own ointments at home.

The general public’s lack of awareness is equally challenging. “There’s one experience, in particular, that stays with me. My sisters and I decided on a whim to get pedicures so we headed to our nearest nail salon. When I walked in the door, my technician refused service – he was convinced my skin was contagious. I left fighting tears, knowing that something in me had shifted a little. The stares are something you just get used to, but the assumptions are difficult to manage – strangers will ask if I’m contagious, or if I was burned in a fire. I’m even offered suggestions for sunburn ointments. I promise, if a lotion exists, I’ve tried it! I don’t mind questions, but many seem to come from a place of judgement rather than sincerity, which makes me a little sad. All I can ask for is what I work to instill into my son every day, always be kind.”

When asked about how her daily routine differs from that of the “norm,” Kim just laughed. “I do a lot more scrubbing, and probably use a lot more lotion, but my routine isn’t that much different! I keep my hair blonde, so my skin flakes aren’t as noticeable and avoid dark colors, and shorts. Because my ichthyosis causes me not to sweat, I have to stay hydrated. Living in the desert, that takes work, but I try to be proactive in everything I do. We recently moved to a new area, so I made sure to inform our neighborhood Facebook group that, while I do have a skin condition that makes my skin look different, I’m very clean and not at all contagious. Bringing it up to people opens up an opportunity for discussion – I want my son to be able to easily make new friends, and I’d never want a misunderstanding or a lack of awareness to affect potential relationships. Proactivity is key!”

Patient Care & the Patient Experience

Amidst the busyness of managing family, a career, and a very spunky toddler, Kim still finds time to check in on ichthyosis Facebook groups and organizations like FIRST, where she spends her time offering guidance and resources to parents who are newly navigating the disease. She and her husband are also in the process of getting certified to become foster parents in the state of Arizona. “I like to think everything happens for a reason. Ichthyosis showed me what it feels like to be an outsider, which in turn helped me to develop a passion for people who society consider to be different. The children in foster care are each navigating their own internal battles. These battles may not look like a skin disorder, but maybe I was meant to endure my own hardship so I could understand how to help others with theirs.”

Toward the end of our conversation, I asked Kim if she had any advice on how we as a society could work to improve the stigma behind ichthyosis and the world of patient care. Her response was one applicable to all areas of life, “We’re just regular people leading regular lives. Sure, we have challenges, but at the end of the day, it’s just skin. Please don’t try to “cure” or fix us. I’m not defined by my outward appearance, nor should anyone be.  Be compassionate, be courteous, and listen with sincerity rather than judgement. And above all else, be kind.”

On this Patient Experience Week, we want to highlight and celebrate the warrior spirits of people like Kim Bregger, and patient advocates everywhere. Thank you for your voice, your resilience, and your dedication to improving the lives of others, and the world of patient care.  Our world is better because of your contributions.

If you want to work with a patient-driven partner that prioritizes the needs of your organization, contact us today for a tailored capabilities presentation. We are a full-service medical communications company that exists to exceed industry standards. Our people are the difference.
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