Many patients endure years of pain and discomfort before finally discovering that their symptoms are caused by a single, often rare condition. This narrative is all too familiar for individuals with scleroderma. Take Dee Burlile’s story, for instance: her suggestion of a potential underlying condition was met with skepticism by her doctor, who remarked, “I’m not going to look for zebras if the zoo isn’t in town.” It took four more years before Dee received a scleroderma diagnosis. Reflecting on her journey, she wished her doctor would have been more willing to "look for zebras"— or consider rarer diagnoses—when common explanations did not fit.
Morgan Hayes, APRN, a nurse practitioner in OrthoArkansas’s Rheumatology Center, applies a deeply personal and patient-centric approach to patient care. By creating a comfortable and understanding environment for her patients, she ensures that stories like Dee’s become the exception, not the rule. While scleroderma is a rare condition, only affecting around 300,000 Americans annually, Morgan understands the importance of learning about rare conditions and fostering a compassionate and trusting relationship with her patients.
What is scleroderma?
“Scleroderma is a general term used to describe autoimmune diseases that cause thickened, hardened tissue,” Morgan explains. “It can be classified as either localized (limited to the skin) or systemic.” Localized scleroderma, including conditions like morphea and linear scleroderma, affects the skin and underlying tissues, not the internal organs. Systemic scleroderma, or systemic sclerosis, affects the skin, blood vessels, and internal organs.
Localized scleroderma typically only impacts the skin, though injury may extend to the tissues below the skin, including the fascia, muscle, or even bone. Localized scleroderma skin lesions can get better and eventually go away.
Systemic sclerosis can be more severe and is divided into limited cutaneous systemic sclerosis and diffuse cutaneous systemic sclerosis. Limited cutaneous systemic sclerosis causes skin thickening in the elbows, knees, and face but not in the trunk of the body (back, chest, or stomach). Diffuse cutaneous systemic sclerosis causes skin hardening on the trunk, extremities, and face, along with organ problems such as renal failure and interstitial lung disease.
Morgan explains that the hardening and thickening of connective tissue is due to an overproduction of collagen. “In healthy individuals, the immune system will trigger cells to produce collagen in response to injury. In patients with scleroderma, this thickening occurs in the absence of injury,” she says. “The immune system becomes overactive, viewing healthy cells as foreign,” she says.
Causes, symptoms, and risk factors
Like most autoimmune diseases, the cause of scleroderma is unknown. “It appears, however, that some individuals are genetically more susceptible to developing the disease,” Morgan says. Research also suggests that other factors cause a greater risk of developing scleroderma:
- Gender: According to the National Organization for Rare Disorders, scleroderma is more common in men than in women.
- Age: According to Johns Hopkins Medicine, localized scleroderma often appears before age 40, and systemic scleroderma is typically diagnosed between ages 30 and 50.
- Race: The American Academy of Dermatology states that Whites and Asians are most likely to get localized scleroderma, while Choctaw Native Americans and African Americans have a higher risk of developing systemic scleroderma.
“There is an acronym for the primary features of scleroderma called CREST,” Morgan says. “CREST stands for calcinosis, Raynaud’s, esophageal dysmotility, sclerodactyly, and telangiectasias.” Other symptoms may include digestive issues, joint pain, and shortness of breath.
Characteristic signs and markers assist with diagnosis.
The diagnosis of scleroderma is based primarily on characteristic signs, including thickening or swelling of the fingers, pale fingers, sparse hair, and ulceration. Specific serologic markers further support the diagnosis.
“In select patients, skin biopsies and other more specific blood tests may be beneficial,” Morgan adds. “Both limited and diffuse systemic sclerosis are classified based on symptom presentation and severity of the disease.”
Learning to manage scleroderma and present further issues
While there is no known cure for scleroderma, treatment focuses on managing symptoms and preventing complications. “Therapy is tailored to each individual and depends on the severity of the disease,” Morgan says. “Usually, treatment also involves immunosuppressive medications that are available in both intravenous and oral forms.”
Providers who think their patients may have scleroderma or any other rheumatic disease should contact OrthoArkansas. OrthoArkansas’s Rheumatology Center includes in-house X-ray, MRI, and high-resolution CT imaging, as well as a state-of-the-art infusion center for diagnosing and managing various rheumatic diseases.
Patients and providers join in a comprehensive care model
OrthoArkansas is dedicated to providing comprehensive care to its patients. The Rheumatology Center supports this vision by engaging both patients and providers in a dynamic, coordinated, and holistic approach to health management. “This approach aims to optimize health outcomes and enhance the quality of life for patients while also fostering a rewarding and effective environment for healthcare providers,” Morgan says.
The OrthoArkansas Rheumatology Center is a place where patients can receive on-site care for their rheumatic diseases and consult with a diverse and experienced team who will work to create a clear, actionable plan to optimize patient health. Visit www.orthoarkansas.com to learn more about the types of specialty services they offer. Learn more about OrthoArkansas’s Rheumatology Center at https://www.orthoarkansas.com/rheumatology.
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Meet Morgan Hayes
Morgan Hayes, MSN, APRN, FNP-C, stands as a testament to the high standards and rigorous qualifications of nurse practitioners today. Certified by the American Academy of Nurse Practitioners Certification Board, Morgan has been endowed with full independent practice authority by the Full Independence Practice Credentialing Committee (FIPCC).
Her academic journey began at Arkansas Tech University, where she laid her foundation with a Bachelor of Science in Nursing degree in 2014. During her undergraduate studies, Morgan showcased her commitment and dedication by successfully passing the Licensed Practical Nurse exam, further solidifying her path in the nursing profession. She advanced her education at the University of Central Arkansas, earning a Master of Science in Nursing degree, which equipped her with the knowledge and skills necessary to excel in the specialized field of rheumatology, a domain she has been practicing in since 2020.
Morgan’s approach to patient care is deeply personal and patient-centric. She emphasizes the importance of creating a comfortable and understanding environment for her patients, ensuring that every visit addresses all concerns and leaves the patient with a clear, actionable plan to optimize their health. This philosophy underscores her dedication not just to the treatment of rheumatological conditions but to the holistic well-being of her patients.
Born and raised in the River Valley, where she continues to live, Morgan’s life outside of her professional endeavors is rich with personal joys and commitments. Alongside her husband, Lee, and their son, Grady, she enjoys the tranquility and fulfillment of outdoor life. Their small cow-calf operation is a testament to her rootedness in the community and her appreciation for the simpler, foundational aspects of life.
Morgan’s professional affiliations with the American College of Rheumatology, American Association of Nurse Practitioners, and Rheumatology Advanced Practice Providers not only reflect her active engagement in the professional community but also her commitment to staying at the forefront of her field, continuously seeking opportunities to grow, learn, and contribute to the advancement of rheumatology care.