Creating New Lives with Ankylosing Spondylitis

Creating New Lives with Ankylosing Spondylitis

Living with Ankylosing Spondylitis: Inspiring Stories of Resilience and Transformation

Ankylosing Spondylitis

Ankylosing spondylitis (AS) is a challenging condition that can affect every aspect of a person’s life. The stories of Lovaine Cohen and Deverell Dotos are powerful examples of resilience, transformation, and the ability to find joy and happiness even in the face of chronic pain.

Lovaine Cohen: A Journey of Surgery and Renewal

Lovaine Cohen’s battle with AS began in her twenties, shortly after giving birth to her first child. What started as lower back pain soon progressed to the point where she couldn’t walk without a limp and relied on a cane for support. At the age of 31, Cohen finally received a diagnosis of AS and tested positive for the human leukocyte antigen B27 (HLA-B27), a gene associated with the condition.

Reaching the point of diagnosis brought relief to Cohen. Finally, she had a name for the physical challenges she had been facing. However, the pain continued to worsen, leading her to quit her job and rely on heavy medication. X-rays revealed that her right hip had very little cushioning cartilage left, and her left hip had none.

At age 39, Cohen underwent hip replacement surgery, a life-changing experience. When she woke up from the operation, she felt a profound difference: the pain was gone. The surgery allowed Cohen to turn her life around. Rehabilitation was grueling, but she persisted. Cohen relearned how to walk and built up her muscle strength through physical therapy and special pillows to support her posture.

Despite her successful left hip replacement, AS continued to cause damage, and a year later, Cohen needed her right hip replaced as well. Through her journey, Cohen learned to embrace her new reality and adopted a holistic approach to her health. She became a health and wellness coach, helping others manage pain and inflammation caused by autoimmune diseases. Cohen firmly believes in the power of positive thinking and urges newly diagnosed AS patients to educate themselves about the condition and explore lifestyle adjustments that may alleviate symptoms.

Deverell Dotos: Persistence in the Face of Doubt

Deverell Dotos

Deverell Dotos’s journey with AS highlights the challenges of seeking a diagnosis and treatment. In his early twenties, as a project manager in New York, Dotos began experiencing difficulties with simple tasks like climbing stairs and lifting objects. He soon found himself lacking the strength to open doors or carry a gallon of milk.

His initial symptoms were shrouded in mystery, but as his condition worsened, Dotos sought medical help. However, his primary care doctor seemed skeptical about his complaints of pain, leading Dotos to question his own experience. Despite worsening pain and failed medication trials, his doctor eventually told him there was nothing more they could do and that it was all in his head.

Unwilling to accept this verdict, Dotos embarked on a quest for answers. He consulted numerous specialists, going through tests that suggested conditions like muscular dystrophy but failed to provide definitive answers. Frustrated and physically and mentally worn down, Dotos persisted.

Through an online group, he learned about the HLA-B27 test, which he pursued and received a positive result. He felt both elated and understood. However, his joy was short-lived when his rheumatologist explained that AS was a potentially serious disease with no cure.

This verdict became a turning point for Dotos. Determined to make the most of his life despite the chronic pain, he sold his possessions and moved to Cape Town, South Africa. Surrounded by natural beauty and cultural vibrancy, Dotos experienced a transformation. He reconnected with hot yoga, which had provided some relief in New York. The heat and stretching exercises helped ease his pain, making him more flexible.

Dotos began reshaping his mindset, reframing his pain as discomfort and viewing it as part of a spectrum. He returned to New York and became a certified hot yoga instructor, emphasizing the importance of building core strength to protect the spine. Today, Dotos practices various types of yoga multiple times a week for 90 minutes to 5 hours. He follows a nutritious diet and limits preservatives, starches, and sugars.

Ten years after learning of his AS diagnosis, Dotos no longer feels the hopelessness he once did. He offers a unique perspective, wondering if AS can be seen as a superpower, emphasizing the strength that lies within individuals to endure and overcome challenges.

Embracing a New Attitude Towards Chronic Pain

Both Lovaine Cohen and Deverell Dotos demonstrate the importance of developing a positive outlook and taking an active role in managing AS and chronic pain. They found strength in actively shaping their lives, pursuing new careers aligned with their passions, and adopting holistic approaches to their well-being.

These stories showcase the significance of education and self-awareness in navigating life with AS. Both Cohen and Dotos emphasize the need to understand how the disease can be affected by factors like diet and exercise. By learning about potential triggers and making lifestyle adjustments, individuals with AS can empower themselves to live more fulfilling lives.

While AS is a challenging condition with no cure, Cohen and Dotos inspire us to look beyond the limitations imposed by chronic pain. Their journeys remind us that resilience, determination, and a positive mindset can lead to transformative experiences and the ability to thrive despite the challenges life throws our way.

*[AS]: Ankylosing Spondylitis

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