A Community Guide to Thriving with Ehlers-Danlos Syndrome (EDS)
At Cool Crutches, we’re proud to support an incredible community of people living with Ehlers-Danlos Syndrome (EDS). This month is Ehlers-Danlos Awareness Month and we’re shining a spotlight on three inspiring women from our community that are living with EDS - Sophia, Emily, and Millie - who have shared their experiences, challenges, and top tips for thriving with EDS. Through their stories, we hope to raise awareness and provide encouragement to others navigating similar journeys.
Sophia Adzoa-Moore, 25, was diagnosed at 24 after 10 years of fighting for a diagnosis. Emily Fay, 27, was diagnosed at 21, a date she says she'll never forget because it was the first time she felt truly heard by a doctor. Millie Bridgers, who has just turned 25, was also diagnosed at 21 after years of unexplained health issues, having no idea they were all connected.
💕 All three ladies demonstrate resilience and the importance of embracing the path you’ve been given. Each has found ways to maintain independence and positivity despite the hurdles posed by EDS. From finding the right mobility aids to discovering joy in creative outlets, they remind us that living with a chronic condition can still be fulfilling and vibrant. 💕
What is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissues, which provide support and structure to various tissues and organs including joints, skin and blood vessels. These conditions can cause a range of symptoms from mild joint discomfort and instability or dislocations to more severed complications affecting multiple internal organ systems. Due to joint instability it can be very hard to find the right mobility aids that don't cause further pain or joint dislocations. The assumption is that gutter style crutches are the only option, but they’re often clunky and ugly! All three of the women in this blog, and so many more within our community are examples of how our style of crutch can help you thrive whilst living with EDS, and that you don't have to opt for ugly, clunky mobility aids!
Even though EDS is a lifelong chronic illness with no cure, many people can still live well with the right support, management strategies, and tool. Raising awareness is super important since many people spend years being misdiagnosed or misunderstood before getting the help they need.
Top Tips for Managing Ehlers Danlos Syndrome
Getting an EDS diagnosis can take many years, it's notoriously difficult and often stressful. These ladies know first hand exactly how tricky it can be but more importantly having been through it all they've learned what does work, what does help and how best to support someone going through diagnosis or navigating life with EDS.
Using mobility aids whilst living with EDS is one key part, but there are so many other things that help. Check out some of the very best tips for living with EDS direct from those that know, below 👇👇
Emily with her Bespoke Crutch
Go-To Products
👉 Sophia's must haves are:
- To help with joint pain and support I use Boots Deep Freeze Roll-on Gel
- Magnesium lotion - the best to help support better sleep with EDS!
- My Cool Crutches - I literally could not cope with hospital issue ones, let alone continue my work as a dancer! I now have quite a collection for every day but also performances including Red Glitter, Gold Glitter, Stardust, Amethyst Sky, and more!
- My access card - it means I can get benefits and discounts across a variety of different places including theatres, theme parks and cinemas. You can read about it and other super useful benefits in the Disability Benefits Guide
👉 Emily also says her collection of walkings sticks and crutches are a lifesaver, plus:
- Tubie pads & tapes are part of my daily life but using fun printed ones I love from Tubie Plus has been a game changer
- A hot water bottle - my constant companion at home!
- Stickman Communication cards if like me, you struggle with your speech some days or expressing how you are feeling these are a fantastic help
👉 Millie seconds Emily's Tubie Tape, however her favourite brand is Cheeky Tapes. Her other fav products are:
- My shower chair (a lifesaver with PoTS) to help reduce pain and fatigue from showering
- Heat! Hot water bottles and heated blankets I use nearly every day
- My medication bag and mat from Tubie Cheeks
- The Chronic Illness Toolkit - it's an easy to digest online guide that I have created on managing day-to-day life with a chronic illness
Mobility Aids
⭐ Sophia:
I use crutches every day because I can’t put weight on my left leg due to pain and as a professional dancer this is incredibly problematic. I really struggled with NHS crutches which were noisy, uncomfortable, and boring not to mention not supportive enough for me to continue dancing. I'm so happy I switched to Cool Crutches not only do they keep me mobile and comfortable, I'm back to dancing every day! In all honesty, I wish I’d had Cool Crutches from the start they have been by far the best mobility aids for my EDS symptoms and me!
⭐ Emily:
I use crutches or a walking stick most days, and sometimes a wheelchair. Cool Crutches has been life-changing, they give me freedom and independence. Before I used Cool Crutches I really struggled with blisters, wrist pain and shoulder pain but now I can move comfortably, for longer! My current fave design is Wings of Spring.
⭐ Millie:
I started using a wheelchair last year after a decline in my health, and recently added a stick for days when I can still walk but need support. I can’t wait to get my first Cool Crutches walking stick - having something that matches my style will boost my confidence so much.
Sophia using her Black Crutches
More or Less
Here's some of the best recommendations from the ladies of what to DO and NOT DO when living with EDS to make life more comfortable, healthier and happier:
✅ Choose happiness and find joy where you can.
✅ Do your physio! Even small improvements in stability can make a huge difference. Combine it with light massage if safe.
✅ Do what you enjoy - just adapt it to be safe for your body.
✅ Staying connected with friends - normal conversation is so helpful!
✅ Sleep - it’s simple, but will fully charge your mental health as well as your body.
✅ Fresh air! It doesn’t have to be a big day out, just sitting in the garden or even just by an open window.
❌ Stay away from unsupportive people. Life with EDS is hard enough without negativity or feeling invalidated.
❌ Try not to overdo it! Listen to your body - pacing is key. It’s okay to rest, say no, and put yourself first.
Life Hacks
⭐Get a blue badge. Don't avoid applying for one if you are young because I can honestly say having a parking badge has changed my quality of life as I can spend more time outdoors.
⭐Check out Zebra Splints. They hand make rings designed to help with hand high mobility, which ultimately helps with gripping and pain.
⭐EDS UK are a super informative and supportive charity that provides brilliant resources on their website and also hosts local Facebook Groups so you can meet people where you live who also live with EDS
⭐ Reading or rewatching your fav series is the best way to get lost in a different world
⭐ A good support system goes a long way. My family and friends help me in so many ways every day.
⭐ Sauna and massage are a great way to relax and recover sore muscles and joints!
⭐ Find an Osteopath or Physio that specialises in EDS.
⭐ Find creative hobbies that you can enjoy no matter how you’re feeling include colouring, painting, and crocheting.
⭐Yoga/Pilates is great for keeping your strength and mobility as well as being good for your mind, but this will look different each time, depending on how your body is feeling.
Sophia, Emily, and Millie are powerful examples of how living with EDS doesn’t mean giving up, it means adapting, advocating for yourself, and finding strength in community.
At Cool Crutches, we’re honoured to be part of everyone's journey, providing mobility aids that don’t just help you move, but help you move with confidence and style.
If you’re living with EDS or supporting someone who is, know that you’re not alone. There’s a whole community ready to lift you up! ❤️
Please check out:
⭐ Sophia's incredible TikTok
⭐ Emily's authentic Instagram
⭐ Millie's supportive website
