Ankylosing spondylitis (AS) had a swift and forceful impact on Lovaine Cohen’s life. Diagnosed in her 30s, she eventually needed hip replacement surgery due to the pain and mobility issues caused by the disease. Cohen first experienced lower back pain after giving birth to her daughter in her 20s. Over time, her condition worsened, causing a limp and a dependence on a cane. At age 31, Cohen received the diagnosis of AS, a form of arthritis affecting the spine. Testing positive for the HLA-B27 gene associated with AS provided some relief by finally giving her condition a name. The pain became unbearable in her late 30s, leading her to quit her job and seek medical intervention. X-rays revealed severe damage to her hips, resulting in the need for surgery to replace her left hip at age 39. The operation was life-changing, relieving her of the constant pain she had endured for years. Rehabilitation was challenging, requiring physical therapy and muscle strengthening. Unfortunately, AS continued to progress, and Cohen required her right hip to be replaced as well. Despite the physical hardships, Cohen’s perspective shifted as she learned to accept her condition and take control of her health. She adopted a holistic approach, considering the interconnectedness of various aspects of her life. This shift led her to a career change as a health and wellness coach, where she helps others with autoimmune diseases manage their pain. Cohen emphasizes the importance of educating oneself about the condition, exploring factors like diet’s impact on AS. Regular monitoring, medication, exercise, and positive thinking are crucial in managing chronic pain. Deverell Dotos also experienced the sneaky nature of AS when it started affecting him in his early 20s. Initially struggling with basic tasks like climbing stairs or lifting a gallon of milk, Dotos’s symptoms progressed, leading to falls and a reliance on a cane. Despite experiencing skepticism from his primary care doctor about his pain, Dotos remained determined to find answers. After years of searching and various medical consultations, an x-ray finally showed damage in his lower back and the testing confirmed AS diagnosis. However, the grim reality of a potentially serious disease with no cure forced him to explore alternative ways to manage the pain. Dotos decided to live in Cape Town, South Africa, where he found solace in its natural beauty. There, he recommitted to hot yoga, which alleviated his discomfort and made him more flexible. Dotos adopted a new mindset, reframing his pain as discomfort on a spectrum that he can navigate towards comfort. He became a certified hot yoga instructor and prioritized building a strong core to protect his spine. His treatment primarily revolves around intense yoga practice, a nutritious diet, and a positive outlook. Despite the initial hopelessness, Dotos now views AS as a challenge to endure and an opportunity to discover his own strength.
Key Takeaways from Experiencing Ankylosing Spondylitis
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