Estimated reading time: 6 minutesThis is a really beautiful story I’d like to share with you. It’s heartwarming, inspiring, and hopefully, gives us all hope of what we can achieve with the right support and solutions at our fingertips.
As the founder of The Zebra Club, stories like Tanya’s bring me such joy. It’s why I do what I do and have done for the past 17 years.
I have seen Tanya’s transformation taking place over the years, and nothing makes me happier than seeing individuals with Ehlers-Danlos syndrome or symptomatic hypermobility gaining confidence, control, and safety in movement.
Notice how it was a gradual transformation – there are no ‘quick’ fixes for chronic illness symptoms like pain, fatigue, and repeated flares.
We Go Slow and Go Low. That’s how we gain sustainable results. Take a read of Tanya’s story to learn how she did that.
Huge thanks to Tanya for allowing me to share her story with you here. I hope you find it as inspiring as I did.
When Simple Tasks Became Impossible: My EDS Starting Point
Before I started The Zebra Club, I had neck pain, leg pain, and pain in my arms for most of my day. I was not sleeping well at night and required sleep medication.
I was only able to walk about one block before my symptoms became much worse. I was not able to carry groceries, push a shopping cart, or put away groceries. I would sometimes cook simple meals, but then had to rest afterwards.
When I would put away dishes from the dishwasher, I would have pain in my arms and neck afterwards for several hours. I could not work on the computer for more than 5 minutes at a time.
I was fearful of most movements. I was fearful of walking, going to the grocery store, turning my neck, or using the computer. I had a forward head posture and rounded shoulders all the time.
From Provider to Provider: The Search for Hypermobility Relief
I felt so utterly defeated that everything I did to try to manage my hypermobility symptoms would cause more flares.
I went to four different physical therapists without any improvement. One of those I saw for over a year, and every time she would try to progress any exercise, my neck would flare.
I felt like I was chasing all these different health care providers: neurosurgeons, vascular surgeons, physical therapists, massage therapists, and specialists all over the country, and I was not getting better.
My neck continued to flare and limited my ability to care for myself and my family. I dealt with these symptoms and pain for over two and a half years before finding The Zebra Club.
The Breakthrough Moment: First Pain-Free Movement in Years
I was searching on the internet for anything that would help me. I felt like I was at the end of my rope. I had tried everything that I could think of to get better.
I came across a video on YouTube that Jeannie posted. First off, I was actually able to complete it without an increase in symptoms.
Then I tried several more of her YouTube videos, and I really connected with her explanations. I continued with these videos for a couple of months and started to notice slight improvements in my overall physical abilities.
I went to her website a few times and read the entire website. I had already spent thousands of dollars trying to improve my health, seeking all types of treatments and doctors.
At first, I was really hesitant to put more money into another thing that might not work, but then I thought, what do I have to lose at this point? Then I joined The Zebra Club and have continued with it ever since.
I was so excited, finally I had found something that was working for my body. I was ecstatic!
Building Back Slowly: Why Foundation Work Was Key to EDS Recovery
When I first started with The Zebra Club, I began with the foundations videos section, which gave an overall explanation of Integral Movement Methods.
I also did Jeannie’s meditations every day. I needed to calm my nervous system first. I found the videos in the Mindful & Stress section (of the app) were very helpful.
I did a lot of videos where I was lying on my back, working on relaxing my shoulders and allowing my shoulders to move into their sockets. These exercises helped my shoulders to no longer be in a slouched, forward posture.
I began to learn about fascia and how this new exercise approach was helping my fascia to glide.
I took it very slowly. Sometimes I only completed a couple of videos a week. I really liked that the videos were relatively short, and I was able to complete them in 15 to 20 minutes. At this point, this was all my body could handle.
The App Features That Finally Made EDS Exercise Possible
The Zebra Club is very easy to use. There are so many classes that require little to no equipment, and I can do these exercises wherever I am at.
I have endless choices of exercises to complete, and the exercises are labeled based on difficulty levels.
I love the verbal cues and demonstrations of the exercises that Jeannie provides; they make you feel she is right there with you, teaching you these exercises. The verbal cues for breathing and relaxing tension make such a difference for me.
How I Learned a Completely Different Way of Exercising with EDS
As a former occupational therapist and former long-distance runner, both for over 20 years, I have seen all types of exercise programs. Jeannie’s program is completely different from any exercise program I have ever seen.
Her program is specifically designed for the hypermobile person.
She begins each video with focusing on relaxing the body through breath and relaxation before starting any exercise. I have learned a completely different way of exercising that no longer causes me pain and is very safe for me.
Prior to joining The Zebra Club, I was at a point where I could not exercise at all. Any time I tried exercises recommended by my PT, I would always end up in pain, often for several days.
Getting My Life Back: From Unable to Walk One Block to 3-Mile Daily Walks
The Zebra Club has given me my independence back. It has given me my life back. I am able to care for my children and take care of my home again. It provided me with hope and a community of fellow hypermobile people when I desperately needed it.
I am now able to walk 3 miles every day or longer if I want to. I am able to be up all day without needing to lie down to rest. I can cook a full meal, wash dishes, and still go for a walk after dinner with no symptoms.
I can actually go to the grocery store and push a full grocery cart. I can lift and carry things now. I can wash clothes and carry the laundry upstairs by myself. I do not have pain anymore except on rare occasions.
I no longer take medications for sleep or POTS. I can’t explain to you how much of a blessing it is to no longer have pain, to a person who has had chronic pain for years, this is amazing!
I am now able to complete the challenging classes in The Zebra Club. I can feel myself continuing to get stronger from these classes every day. My posture has made the most improvements; I don’t even have to think about correct posture anymore. My body now does this naturally on its own.
I am an overall calmer person now. I am no longer a chest breather. I feel strong and healthy. I am able to do light yard work, housecleaning, and vacuuming now. I went with my family on a hiking trip to Utah in March and hiked 5 miles and walked around several national parks.
We are leaving for our first trip to Europe in a week, where I will have to walk many miles a day sightseeing, and I know I am ready for this trip.
If You’re Afraid to Exercise With EDS, This Message Is for You
I would say that you have nothing to lose but everything to gain. Life is so precious, and being healthy enough to enjoy it is so important.
When I was sick, my world was so very small. It felt like it was getting smaller every day. But after beginning The Zebra Club, I began to feel safe in my body, and that is when the change happened.
The body is meant to move, and movement heals.
So many doctors and therapists told me all sorts of things I would never be able to do again. They were wrong. I was meant to live a full life, and to create that life, I needed to be doing movement every day.
The Zebra Club has given me something I have not been able to find anywhere else. It has shown me how to use movement to heal my body and to keep me strong and healthy. And who doesn’t want that?
A huge thanks to Tanya for sharing her story with us!
Ready to try what Tanya discovered? If you’re feeling inspired but nervous about starting movement with EDS or hypermobility, this gentle starter class is designed exactly for where you are right now. As always, if any move doesn’t feel good to you, skip it and come back later.
FAQ
What is the app for people with EDS?
The Zebra Club app is a movement therapy app for people with EDS. It has a deep library of exercise videos and meditations for all levels, an incredibly supportive international community, monthly meet-ups with EDS experts, and a resource library with past expert presentations from physical therapists, internists, occupational therapists, and more!
Why is it called The Zebra Club?
Medical students learn to “think horses, not zebras” when diagnosing—look for common conditions first. Those with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) are the “zebras”—repeatedly misdiagnosed because their conditions don’t fit the typical patterns doctors expect to see. We have taken the zebra as our mascot!
Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.
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