Joyce and Her Many Attributes Over the past few years, my mobility has declined due to the worsening of my Ehlers-Danlos Syndrome symptoms. In addition to this, my ability to do things independently has plummeted. I aspire to stay as independent and active as possible, despite the new challenges of my condition. Since receiving the power wheelchair, I am pleased to say that these aspirations are so much more achievable. With the independence the chair gives me, I can go shopping, attend events, and participate longer in activities that were once incredibly difficult. Everywhere I go, I no longer have to worry about finding a comfortable seat, always having someone present in case I need assistance, nor do I need to worry about hurting myself from standing or walking too much. Due to how much the power chair helps, it has also eased the fear I hold of damaging my body and joints even more when going out, which greatly improves my quality of life. Additionally, as many of my friends and family know, I love to dance. Since the onset of my Ehlers-Danlos Syndrome and the rapid decline in my mobility, dancing has not been in the cards for me. However, with this power chair, I am able to dance in the chair and move freely with it. No more will I have to sit on the side while others enjoy music at events, I can join in and do it completely independently. Overall, I can enjoy even simple daily tasks so much more with this chair because it alleviates a lot of stress, fatigue, and pain.” - Shyla Bradley, age 23

Note: Shyla names all of her mobility aids and she named her new electric wheelchair Joyce because it has a joystick to maneuverer the chair.

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Due to my Ehlers-Danlos Syndrome, I have developed craniocervical instability which has led to a condition called Trigeminal Neuralgia. I am often sent into a flare with this pain when something pushes against my Trigeminal Nerve, which is located next to the ear and throughout the face. It has been particularly difficult to find pillows that support my neck but don't put pressure on this nerve, which has led to many sleepless nights. I found a pillow that takes the pressure off this nerve and I am so grateful that the Zebra Hearts Foundation was able to help me by paying for it. This pillow has helped significantly with reducing my pain, improving my sleep, and overall improving my quality of life.” - Shyla Bradley

Austin, 14 years old, has an underlying diagnosis of Ehlers- Danlos Syndrome. For the past year he has been experiencing significant abdominal pain. After several tests performed on his gastrointestinal tract, which all came back as normal, he was diagnosed with Functional Abdominal Pain. Functional Abdominal Pain, also known as intractable abdominal pain, is persistent stomach pain that does not resolve with usual therapeutic treatment. The pain may be constant or may come and go. NeurAxis, Inc. has developed a non-invasive treatment called the IB-Stim. The IB-Stim is a percutaneous electrical nerve field stimulator (PENFS) system intended to be used in patients 11-18 years of age with functional abdominal pain associated with irritable bowel syndrome (IBS). The IB-Stim is a non-surgical device that works by sending gentle electrical impulses into cranial nerve bundles located in the ear. This stimulation targets brain areas that process pain and helps reduce functional abdominal pain. Austin began treatment in April 2023. The IB-Stim was placed by a trained nurse at the GI doctor’s office. Austin would wear the device for 5 days straight. The device can be removed at home and he would be device free for 2 days. He would then return for a new device placement at the beginning of the following week. It is recommended that treatment be implemented for a minimum of 4 weeks. Austin experienced some skin discomfort on and around his ear for the first couple of days after the first device was placed. He then got used to the device without many issues. He was able to sleep well, just was not able to lay on that side of his head. By the third week he was experiencing a decrease in his abdominal pain. Even to the point where he would occasionally forget about his symptoms. Due to these hopeful results, we requested to continue his treatment for 2 additional weeks. The IB-Stim is not yet covered by many health insurance companies as many still consider this treatment experimental. It is currently FDA approved and NeurAxis is advocating for more insurance companies to approve their treatment. Our insurance company did not cover the treatment. Our family qualified for the NeurAxis Patient Assistance program and we were able to get a significant reduction on the cost of the device. Austin would like to thank the Zebra Hearts Foundation for their support and for covering the cost of his treatment. Visit the NeurAxis website below for additional information on the IB-Stim. https://ibstim.com/” - Robin Doubleday, Austin’s mother