Backpacking for Behcet’s Disease Awareness: Cindy Todd’s Inspiring Journey

Backpacking for Behcet’s Disease Awareness: Cindy Todd’s Inspiring Journey

Cindy Todd is not your average hiker. At 53 years old, she backpacks over 1,750 miles annually, traversing trails in the Sierra Nevada Mountains, the Mojave Desert, and the Grand Canyon, as well as international destinations like Japan, Switzerland, and Hong Kong. But Cindy's passion for hiking has a deeper purpose: she’s raising awareness for Behcet’s Disease, a rare autoimmune condition that has shaped much of her adult life.

Diagnosed in 2011 after years of mysterious and debilitating symptoms, Cindy’s life took a dramatic turn. She now uses her love for the outdoors to advocate for more research and better treatment options for Behcet’s Disease.

Living with Behcet’s Disease: Cindy’s Story

Behcet’s Disease is a chronic inflammatory autoimmune condition that can affect various systems in the body, leading to symptoms such as rashes, sores, and neurological disturbances. Cindy’s journey began in 2008, when she started experiencing extreme exhaustion, strange rashes, and unsettling neurological symptoms. At times, she couldn’t feel her feet or her clothes, and the discomfort would leave her distant and drained.

The path to her diagnosis was long and arduous. After three years of frustration with local doctors, Cindy finally found answers at a tertiary hospital in Los Angeles. “When I was diagnosed, it was a relief. I finally knew what I was dealing with,” she recalls. However, the journey didn’t end there—finding the right treatment came with its own set of challenges.

Like many with Behcet’s Disease, Cindy goes through “flare-ups,” where she experiences intense physical and mental exhaustion, coupled with other symptoms like skin rashes and autonomic dysfunction. She describes these flare-ups as trying to run in a pool with a wet wool blanket draped over her. Fortunately, after years of trial and error, she is now on a medication regime that has significantly reduced the frequency and severity of these flare-ups.

Finding Hope on the Trails

Before her diagnosis, Cindy couldn't even imagine hiking or backpacking. Her symptoms were too severe, and she was overwhelmed by exhaustion and pain. But over time, and with the right treatment, Cindy reclaimed her life. Now, she backpacks several times a year in some of the most breathtaking and challenging landscapes in the world.

Her motivation for hiking goes beyond her personal love for the outdoors—she hikes to raise awareness for Behcet’s Disease. Through her blog and social media, she shares her experiences on the trail, hoping to educate people about the condition and the need for more research into better treatments. Cindy believes that public awareness is critical: “The more people talk about it, the more likely pharmaceutical companies and researchers will pay attention and work on finding better solutions.”

Read more: How to Choose Hiking Boots

The Importance of Proper Foot Support

Long hikes across rugged terrains require not only physical strength but also the right equipment. For Cindy, staying active despite her illness is possible thanks to the gear that supports her physically demanding treks. One essential part of her backpacking routine is the use of Orange ¾ Insoles, which help provide the support she needs on long hikes. The insoles help with proper foot alignment, reduce muscle fatigue, and offer much-needed comfort during her hours on the trail.

Foot health is particularly important for someone with an autoimmune condition like Behcet’s, where flare-ups can exacerbate joint pain and fatigue. The Orange Insoles offer a balance of cushioning and support, keeping Cindy's feet comfortable and properly aligned as she embarks on her journeys.

Challenges in Accessing Healthcare

Living in a rural area, Cindy initially struggled to find specialists who could diagnose her rare disease. It took years of frustration before she was referred to a specialist in Los Angeles, where she finally received her diagnosis. This, unfortunately, is a common story for those with Behcet’s Disease, with many patients waiting 7-11 years for an accurate diagnosis.

Despite these challenges, Cindy has been fortunate. Her treatment plan, created by specialists at a tertiary hospital, has been effective, and her healthcare team has been able to navigate insurance issues that sometimes arise. Still, she acknowledges how difficult it can be for others to access the care they need, particularly in rural areas.

Raising Awareness and Inspiring Others

Through her hiking and advocacy work, Cindy is committed to spreading awareness about Behcet’s Disease. She encourages people to talk about rare diseases, raise awareness, and write to their congresspeople and pharmaceutical companies asking for more research. Cindy’s efforts have taken her from the trails to the boardrooms of pharmaceutical companies, where she has spoken with CEOs and medical directors about the need for better treatments. Her work was recognized in 2021 when she was honored as the Vasculitis Foundation’s Patient Hero.

For Cindy, raising awareness is not just about informing the public; it’s also about inspiring others living with autoimmune conditions. She wants people to know that despite the challenges, there is hope. “I hope to inspire others who have been diagnosed with an autoimmune disease to keep moving forward and to find something they love,” she says. Cindy continues to hike, run, and bike to raise awareness, proving that with determination and support, people with autoimmune conditions can still lead full, active lives.

The Path Forward

Behcet’s Disease is a lifelong condition, and Cindy knows firsthand the importance of ongoing research and public awareness. She hopes that her efforts, combined with those of others raising awareness for rare diseases, will spur further studies into new treatments and possibly even a cure. Until then, Cindy will keep hiking, raising awareness one step at a time, and encouraging others to find their own paths to healing.


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