Here at Wild Tribute, we aren’t just 4 the Parks and 4 the Forests— we are also 4 the people. We recently donated to Cindy Todd, a California woman hiking to raise awareness for Behcet’s disease. Below, she notes more on the disease, and why she chooses to hike to raise awareness.
On Behcet’s Disease
I have Behcet’s Disease.
Behcet’s Disease is a rare inflammatory autoimmune disease. More research desperately needs to be done on the disease itself as well as on better treatment options. I backpack (and hike) for Behcet’s Disease Awareness, and this is my story.
Cindy Todd wearing her Wild Tribute shirt.
In 2008, I suddenly felt like I had the flu— but I knew it was different. I was so exhausted that it felt like I was trying to run in a pool with a wet wool blanket on me. I had strange rashes appear and soon after, started noticing neurological symptoms. Suddenly, I couldn’t feel my feet from the ankle down. Another time, I was walking into work, and I panicked as I couldn’t feel my clothes. It’s not that I was consciously aware of my clothes before, but when you suddenly can’t feel them, you notice. I thought I was standing in my employer’s parking lot naked. Luckily, when I looked down, of course I did have clothes on. More symptoms stated to occur followed by frustrating doctor’s visits without answers. Finally, after 3 years of seeing local doctors, I went to a doctor at a tertiary hospital in Los Angeles and was diagnosed.
I was relieved to have a diagnosis and immediately began receiving treatment. This was a new beginning, the beginning of a long road of disappointing treatments and harsh side effects. Years later I have a good treatment regime that is largely effective with virtually no side effects. This frustrating road is why I backpack for Behcet’s Disease Awareness.
Cindy's Campsite at Alabama Hills, Sierra Nevada
Right before my diagnosis, I started backpacking as I happened to go on a geology field trip with my college. I hadn’t camped since I was a kid, and I loved this field trip. I was already a hiker. So, I booked a guided backpacking trip down to the bottom of the Grand Canyon and back. I was in love. I then started backpacking on my own. Of course, it’d take a full month to pack for a 2 day backpacking trip as this was pre-diagnosis and I was experiencing symptoms from Behcets.
While backpacking, I felt like I was going to die on the trail. But I kept telling myself, just make it to the next tree, to the next boulder. And by doing so, not only would I be able to finish the trip, I felt empowered. I felt like I didn’t have to let this disease define me. It was a great awakening.
I usually backpack in the Sierra Nevada’s (Ansel Adams Wilderness, Yosemite, Sequoia & Kings Canyon National Park, Inyo National Forest, etc.), Mojave Desert, and Death Valley National Park. I’ve backpacked to the bottom of the Grand Canyon and back twice. I’ve hiked in England, Scotland, Czech Republic, Romania, Switzerland, Hong Kong & Turkey. I hope to go to Japan, Singapore, or Taiwan next.
I’m trying to educate people on Behcet’s Disease. By being active and having a narrative to intrigue people of various backgrounds. I am able to connect with and draw in new demographics to educate on this rare disease. I wanted people to learn about the disease and how more research is needed for better treatments. To show them that I’m not just someone who is sick, but someone who is pushing myself to make a change in the medical community. I hope to encourage people to write to their Senators & Congress members, advocating for my research for Behcet’s Disease. I’ve also done interviews with two Pharmaceutical companies, advocating for more research.
You can learn more by purchasing my book here: https://amzn.to/3njd3w5