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Ehlers-Danlos Syndrome: A Conversation with Kylee

We talked to the fabulous Kylee Black for Ehlers-Danlos Syndrome awareness month. Here's what she had to tell us about living with her condition.

Kylee Black in her wheelchair, posing and laughing

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder that alters a person’s collagen. Collagen is vital for providing structure and strength to skin, joints, and blood vessel walls. As Kylee, an individual living with EDS, explains, “Imagine how a rubber band stretches and returns to its original shape; an old rubber band stays loose; my body is kind of the same, loose and fragile.” This analogy captures the essence of how EDS affects the body. Unlike a simple collagen deficiency that could be supplemented, EDS involves the incorrect structure and function of collagen, leading to significant physical challenges. EDS has many different types and affects each person differently.

Kylee's Experience with EDS

Kylee's daily life with EDS is a testament to resilience and adaptability. "Different days allow different things. Some days I can do one thing, that another day I may not be able to do at all. I can't control my circumstances and how it affects my body day by day; however, I can choose how I respond to them," she shares. A pivotal moment in Kylee's journey was when she shifted her focus from what she couldn't do to what she could achieve with the resources available to her. This mindset has been crucial in navigating her daily life with EDS.

Daily Life Challenges

Living with EDS presents unique daily challenges for Kylee. She relies on a feeding tube, an ostomy bag, and a central line due to digestions issues with and food and fluid often ends up in her lungs, posing a serious risk. Despite these obstacles, Kylee finds joy in joining in with friends, eating for pleasure, though her nutrition primarily comes from medical formula through her feeding tube. Her physical limitations are significant: "I need to be reclined most of the time, which affects my ability to do everyday tasks. I cannot do repetitive tasks that use joints, such as using knives and forks." Additionally, a severe tremor complicates simple actions like eating, she uses lightweight utensils and a glass straw to drink. Walking unaided is a challenge due to joint instability, necessitating the use of supports like her wheelchair.

Adapting to Life with EDS

Kylee’s approach to managing her condition is proactive and thoughtful. "My entire life is a balancing act, and everything I do has a cost. I live life fast and hard but then carry that cost behind the scenes," she explains. This philosophy enables her to live her best life despite the constant challenges.

Supporting Someone with EDS

Support is crucial for individuals with EDS, and Kylee emphasizes the importance of a compassionate and responsive support system. Her healthcare team, whom she affectionately calls "The Crew," plays a vital role in her well-being. "They support me by listening to me and being empathetic. We're in this together," Kylee says. Empathy and active listening are key to providing meaningful support.

Staying Connected Through Technology

For Kylee, technology is a lifeline. "My phone is my lifeline; it gives me access to my entire world," she notes. Social media plays a crucial role in raising awareness and fostering community support. Despite her physical limitations, Kylee started her business, Kylee & Co, using just her phone while hospitalised. This highlights the importance of accessible digital platforms.

Kylee's regular use of technology includes AirPods, smart technology in the home, and a wheelchair with a USB port for charging her phone. Voice-to-text features and power banks are indispensable. Captions on all platforms, she says, are life-changing, underscoring the need for accessible technology.

Challenges with Digital Access

Accessibility remains a significant barrier. "I can't sit up or hold my hands out to type, so I can't use computers or laptops. Portable and accessible technology is important so I can use it," Kylee explains. She stresses the need for websites to be optimized for phone use, including captions, proper target sizes, image descriptions, and alt text.

Assistive Aides for EDS

Kylee uses various assistive aides to manage her symptoms, such as migraine ice and heating packs, special pillows to support her joints, and an accessible controller for gaming systems. However, she also highlights the need for car modifications that are suitable for her in New Zealand, which are currently unavailable.

Enhancing Digital Inclusivity

Web designers can enhance inclusivity by ensuring websites are compatible with mobile devices, text to speech capable, providing captions, and including accessible features like alt text and appropriate target sizes. Kylee’s experience underscores the importance of digital accessibility, which can significantly improve the quality of life for individuals with EDS.

Final Thoughts

Kylee encourages a deeper understanding of EDS, emphasizing that much of what individuals with the condition endure happens behind the scenes. "It is important to believe someone when they tell you about their experiences. Take time to learn a bit about my world; it takes pressure off me," she says. Thoughtful considerations like accessible venues and transportation for social events demonstrate care and inclusion. Human interaction and connection are powerful, and simple gestures can profoundly impact someone's day.

Kylee's story is a powerful reminder of the resilience and adaptability required to live with EDS. By fostering awareness and improving accessibility, we can create a more inclusive and supportive environment for those affected by this condition.

Thank you Kylee for taking the time to talk to us and share your story. You can find out more about Kylee (Kylee Black Public Speaker) and support Kylee & Co by visiting her website.

And remember if you would like to join our Access Panel, please contact us.