About me.

Hi, I'm Katie, the creator behind DinkyKTS EDS Diaries. Living with Classical Ehlers-Danlos Syndrome (cEDS), I've faced a lifetime of challenges that have shaped me into someone who is determined, creative, and passionate about making a difference. Diagnosed at just 2 1/2 weeks old, my journey has been a whirlwind of medical appointments, early therapies, and learning to navigate life with severe scoliosis, chronic pain, fatigue, and anxiety. 

Despite the hurdles, I've always found joy in creative outlets.. Whether I'm reading a book, writing heartfelt stories or sketching, (even when it makes my hands ache), these activities give me a sense of freedom and purpose. My dream is to one day publish books that inspire others as well continuing to build a supportive community for people like me.

I live in a bungalow with my incredible parents, who have always provided in unwavering support. My mum and dad have been my rock, helping me through the toughest times and cheering me on through every small victory. We share our home with Pixie, our little cat who loves cuddles and getting into mischief. She keeps me smiling, even on my worst pain days.

Family is incredibly important to me alongside my parents. I'm lucky to have a wonderful old sister Claire, her husband, and my adorable niece, who never fail to brighten my day. I also have a huge extended family, who are some of my biggest supporters, always cheering me on and celebrating my milestones. 

Outside of family, I'm incredibly grateful to have a close-knit group of friends who stood by me through thick and thin. They've been a source of strength and laughter, reminding me that even on the hardest days, I'm never alone.

One of my biggest struggles is severe scoliosis, which has limited my treatment options and presented unique challenges. Despite this, I've learned to adapt and stay determined. Living with cEDS has taught me to celebrate small victories, cherish the little joys, and keep pushing forward, no matter how tough things get.

When I'm not advocating or creating, I love getting lost in the world of my favourite boybands - especially one whose one of its lead singers, Jordan, holds a special place in my heart. Music has always been a source of comfort and escape for me, especially on tough days.

My ultimate goal? Is to start a foundation dedicated to cEDS and creating resources for those living with it. I want to ensure that no one feels as alone or misunderstood as I did growing up.

About DinkyKts EDS Diaries

I started DinkyKts EDS Diaries in 2013 as a small, personal project to document my experiences living with Classical Ehlers-Danlos Syndrome (cEDS). What began as a way to express myself has grown into a platform for advocacy, awareness, and connection. Through my blogs, videos, and creative projects, I share the highs, lows, and everything in between about life with a rare connective tissue disorder. 

DinkyKts EDS Diaries isn't it just about me - it's about building a community. My mission is to bring people together, especially those living with cEDS, to share experiences, educate others, and offer support. From stories about my early interventions, like physiotherapy and occupational therapy, to insights into managing day-to-day challenges, I aim to show that there's strength in vulnerability and power in sharing our journeys.

Over the years, I've been humbled to see how DinkyKts EDS Diaries has helped others feel less alone. It's a space where we can have all have honest conversations about what it means to live with cEDS and celebrate the resilience and creativity within our community.

In addition to raising awareness, I'm passionate about using this platform to highlight the importance of research and early interventions for cEDS. I believe that knowledge is key to creating a better future for those living with this condition, and I'm determined to be part of the change.

Whether you're here to learn more about cEDS, connect with someone who understands, or simply find a bit of encouragement, welcome to DinkyKts EDS Diaries. Together, we can build a more supportive and informed world for everyone impacted by cEDS.

If you've made it far, thank you for taking the time to get to know me! My journey with cEDS is only part of who I am, and I hope DinkyKts EDS Diaries can be a space where we can connect, share stories, and support one another. Whether you're here to learn more about EDS, find a community or simply say hello, you're always welcome. Let's raise awareness, inspire hope, and create something beautiful together!

With love and gratitude,

Katie

Katie Keeps On Smiling Despite Rare Condition

A woman who suffers from a rare and life limiting syndrome is working tirelessly to his awareness about her condition. Katie Wearing, 29, was diagnosed as a baby with.Ehlers-Danlos Syndrome, a rare condition which of the time of Miss Wearing's birth, was suffered by just one in every 30,000 children. 

During  her lifetime, the condition has caused Miss Wearing to lose the use of one hand, endure regular dislocations and  have stretchy skin - but through it all she has always remain upbeat, and is a dedicator fundraiser for the Ehlers-Danlos Support UK charity. 

EDS is it connected tissue disorder which includes skin hyperextensibility, abnormal wound healing, and joint hypermobility.

Miss Wearing's mother, Sue Wearing, said she could tell something wasn't right as soon as her daughter was born. 

She said "She was premature and had a heart mumur. We took her to Manchester and a Professoe diagnosed her as having EDS."

Miss Wearing describes herself as being "very floppy" when she was a baby and that she was able to twist her wrists and ankles right round. 

She said "I was in casualrt a lot when I was younger, with dislocated knees and elbows. It's very painful as my skin is also very stretchy. When I have plasters or sticky dressings, it can hurtt quite a lot as they pull my skin."

Miss Wearing's worst incident took place when she was four years old and she was riding a tricycle that she had been given for her birthday. 

Her mother said: "She fell off it and her elbow came out. Because of the EDS, Katie bleeds a lot, so we had to use a few towels and take her to hospital."

Miss Wearing uses a walking frame around the house and a wheelchair when she is out and about.

Her condition has caused her to have two curves in her spine which can make mobility an issue and has caused her to grow to just 4ft 1in.

As she grew up, Miss Wearing had a spine brace and leg callipers to help her walk.

Mrs Wearing said: "Her dad used to say that she looked like a robot."

But despite all the health problems Miss Wearing had to endure, she still managed to complete her A-Levels and keep a positive attitude. 

She said: "I get very tired so doing my GCSE'S and A-Levels were difficult, but I had a lot of support. 

"I went to Barrow Sixth Form and they were great, they allowed me to complete my A-Levels in four years. It's not about how fast you achieve something, it's about getting there.

"People always say that I am always smiling, I have my bad days and my good days.

"There is so much going on in the world that I don't want to make people feel worse so I just smile and try to be positive."

Miss Wearing raises awareness and funds for the EDS charity: selling T-shirts and crafts that she makes.