Blog EDS Management School

Ehlers-Danlos Syndrome (EDS) School Assembly Presentation

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In April I had a call from the head of my children’s primary school to ask if my two youngest children (who attend the school) would like to present a whole school assembly about the medical conditions that are in our family. It would be completely up to us what we said, how we said it and the individual topics that we chose to cover. The head thought that it would be a lovely idea to share their experiences, if they felt happy with that.

I said I would ask them both and get back to them.

I think being an advocate for invisible illness must run in the blood because they could have bitten my hand off when I asked them and they immediately got to work making a power point presentation.

We had a chat and decided to just cover EDS. Talking about EDS and CMT in one go to adults can be a bit mind-blowing let alone to children and with EDS Awareness month fast approaching it seemed the obvious choice. Perhaps they would have the opportunity to talk about CMT at a later date.

The assembly covers;

  • Being Bendy
  • Hypermobility, hEDS and HSD
  • The multi systemic nature of hypermobility
  • We are all different
  • The spectrum of hypermobility
  • The story of ‘The Princess And The Pea’
  • Provisions that help
  • Why the zebra?
  • Prayer
  • Hymn “If I were a butterfly’

On the day (well they actually did it twice, to the infants and the juniors) they presented beautifully. Spoke clearly, acted brilliantly and raised loads of awareness amongst the children, staff and governing body.

I’m very proud of their first foray into advocacy.



What do you think?

They would love to hear your comments, if you have a message please post it below, it would make them very happy kids 🙂



  1. elizabeth renard Reply

    just stumbled across this blog post. i’m newly diagnosed and this made me tear up and genuinely explained things in a much clearer way than i ever have been by doctors. i know this was a while ago now but you truly have an amazing family, this assembly must’ve taken so much time to prepare for and required so much confidence. i hope everyone in your family is doing okay at the minute x

    • Sarah Wells Reply

      Thank you so much! I thought that they were amazing too 😉
      They get it on a level that most Drs just can’t comprehend but they live with it every day so I suppose if anyone would, they would. They see their Mum dislocating trying to put their hair in a pony tail, their brother educated at home because he’s not well enough to go to school, their Nan fall and dislocate her shoulder and the ambulance have to come because we can’t get her up. It’s all just normal here! Take time to let it all sink in, be kind to yourself and then you will need to learn how to LIVE with EDS. It won’t always be easy, it certainly won’t be ‘normal’ but who want to be normal anyway?! Hugs S x

  2. What a brilliant assembly! So well explained! My daughter could have hEDS – she was diagnosed with ME/FS 2 years ago, but has always had problems with her ankles – flat feet & ankles that roll inwards, she used to sprain them all the time! Just by walking. She’s also had problems with knees, and back, headaches, migraines, dizziness, fatigue, brain fog etc etc (all the symptoms of ME) and she’s quite bendy. Not ever so, but mildly (mostly fingers, ankles, wrists & hips). We had one doctor who suspected hypermobility & EDS but have never had a diagnosis. At the moment she’s too unwell to even go to hospital appointments & is mostly in bed 🙁 – but your assembly is amazing. I’ve even learnt some new things from your assembly that I didn’t know before, things like extreme sensitivity are common in EDS and skin allergies, rashes, hives etc – she gets all of those too. So Thank you, hopefully we will get a diagnosis one day!

    • Sarah Wells Reply

      Hi Claire, MCAS (Mast Cell Activation Syndrome) is seen often in EDS just as it is in M.E. I’m sure that MCAS is at play with three of us here. My eldest also has a diagnosis of M.E./ CFS as well as EDS now which hadn’t been confirmed when the kids made this assembly. There are similarities between the two – definitely – but also distinct differences. My youngest has pain and fatigue issues that we always have to manage because of EDS but they are not on the scale of my eldest’s. They both have sensitivities especially in the skin but at his worst I couldn’t touch him for months, literally. I’m sorry your daughter is so unwell, as a mum dealing with the impact of M.E. on our family is one of the hardest things that I have ever had to do in my life. Hugs. Sx

    • Great job kids! I shared this on FB. I would love to send this to every doctor we have seen over the years. Glad you are educating your classmates. They may grow up to be doctors, nurses, or physical therapists that will actually know about this and have compassion. Wishing you well from Buffalo, NY.

      • Sarah Wells Reply

        Thank you so much! They were great weren’t they?! This was nearly two years ago but is still more up to date than most doctors thinking about hEDS or HSD. Most still don’t even use the right terminology! Sending love from London. X

    • I am so grateful to your children for putting together this assembly and to you for putting it onto your blog. My 8 year old daughter was diagnosed with HSD in March of this year, but has had pain for years without diagnosis or reliable treatment. She has yet to meet anyone with HSD or EDS or really anyone her age with chronic pain. We live in Wisconsin, USA. She was so glad to see this video and to learn from some young people about her disease! Then she showed it to her sister… Then her sister shared it with Dad!
      Thank you so much to you all!

      • Sarah Wells Reply

        Thank you so much! I was so proud of them. If it helps one family or better still one school put in the right support for a child with HSD/hEDS because they get it, then it was worth it. Sarah x

  3. I absolutely LOVE this wonderful program by your precious children. I’m so impressed with their composure and ‘sparkle’ while presenting so much information on this invisible disease – a concept so aptly explained by both The Princess and the Pea and the Zebra. Please tell them I loved it and all the work they obviously put into it. Kudos to them — and to you! <3

    (I do not have EDS but do have CMT – and have been following you for a few years)

    • Sarah Wells Reply

      Thank you so much Susie, they did so well. Rubie is planning a CMT assembly (although I must talk to the head about it!!) as she wants to show how that is tricky too. Her brother will be in high school so she will have to go it alone if she does. We thought that covering EDS and CMT at the same time might cause a little confusion 😉
      S x

  4. Well, this might surprise the kids but their presentation has made it all the way to AUSTRALIA!! I’m in Adelaide! What a wonderful entertaining yet educational assembly! Congratulations kids

    • Sarah Wells Reply

      Thank you so much!!! I cant wait to tell the kids xx

      • Sarah Wells Reply

        Thank you so much Bettie. They are all amazing in their own ways 🙂
        S x

  5. Fabulous assembly from two adorable children…great way to explain it all…

  6. Jennifer Watson Reply

    You must be so proud, perfect shining stars of the future, brilliant and positive children. They got that message spot on and hope our EDS warriors can DAZZLE together, that has made my day. Stay Positive and Stay Strong 💪🏻.
    Thank you.

    • Sarah Wells Reply

      Thank you so much!! They are my superstars. S x

  7. Tara Mundorff Reply

    I live with EDS and CMT too. Some days are struggle but all days are gifts 💗

  8. That was so amazing! Their confidence and ease of speaking about their medical lives is incredible! I was SO shy about EDS as a kid, but definitely wish I would’ve spoken up more about it in youth. I love that they have such a strong family support system – you can really see that shine through in their assembly. You are raising amazing, brave and caring kids. Keep up the great work!

    • Sarah Wells Reply

      Thank you so much Abbey. Our family motto is to be proud of your perfect imperfections. Not everyone is good at everything but everyone is good at something. Growing up with EDS, CMT, CFS (or all three) I think makes them all stronger than most, they have a great outlook on life and most definitely know how to make the best of a situation. I’m going to check out your blog, glad you’ve found your voice now 😉 Sarah x

  9. What brilliant, articulate, courageous, amazing, happy children you have. Not only did they make me aware of the syndrome that I had no idea about to begin with but they stole my heart at the same time. Well done kiddos and well done mom and dad. You are doing something right!

    • Sarah Wells Reply

      Courtney, thanks for taking the time to write such a lovely comment. They are great kids, I’m glad they came across so well and raised a little awareness along the way 🙂 xxx

  10. Your children laid it out so eloquently! You should be very proud. Gentle hugs from the US.

    • Sarah Wells Reply

      Thank you Bethany, they did so well. Now they want to roll it out to other schools. Don’t know how that will work but you can’t knock their enthusiasm 😂😂😂 x

  11. Nan Sys: This is so wonderful!!! Tell your children a big Well Done!! May I please share the video with friends and family? <3

    • Sarah Wells Reply

      Thank you so much 😊, please share, that would be lovely. X

  12. What an amazing thing to do! I wish I’d known when I was young what was wrong. They gave an amazing understanding and attitude towards eds, well done!

    • Sarah Wells Reply

      Me too! so much would be different for me now if I’d known what I was dealing with as a child. All my kids understand what’s going on for them, and why, but just get on with it with a big smile on their face. It’s the best way isn’t it!?! 🙂

  13. Tara Hewson-Hodges Reply

    Absolutely Brilliant, so perfectly explained in a way for everybody to understand & they did it so well! 😀

  14. Hayley Airzee Reply

    I’ve just replied on one but can’t find it now grr lol…so..I’ll say it again…
    What an incredible video!
    You guys are so brave!..its just given me goosebumps 😂,
    Also your pictures at the end are amazing,what a beautiful family you are 🙂
    Can I share this? X

    • Sarah Wells Reply

      Oh Hayley, thank you so much my lovely. Please share,lets get the message out there. XXX

  15. My goodness, your children were utterly amazing. Found this through a friend’s Facebook post. Am so glad that I clicked the link. I knew nothing about EDS. Thank you – and them – for informing me!

    • Sarah Wells Reply

      Thank you so much for watching! I think that it’s really important to raise awareness about these rare or rarely diagnosed conditions, it may just be rubbing off on them too 😉

  16. Fabulous. Fantastic. Informative. Interesting. Personal. These young EDS warriors presented their assembly in style and with dignity! You should be awfully proud of these youngsters. Well done.💥 thanks for sharing!

    • Sarah Wells Reply

      Thank you so much Rita, we are so proud of them both! X

    • Sarah Wells Reply

      Thank you hunny, they are both my little superstars xxx

  17. Amazing such great kids sharing so much information.
    They have done so well

  18. Tanya Ames Reply

    I enjoyed watching that! Lovely children and very informative. Pitched at the right level so their peers understand what we go through on a daily basis. Well done!

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