Thanks for getting in touch. I will add your words to our descriptive words project. Please feel free to contribute any other bits and pieces along the way. We can’t get together for a cup of tea but we can talk to each other through the website.

I had an email from Michelle O’Sullivan this week. She is an OT specialising in hypermobility conditions and connective tissue dysplasias in Sydney. She has Ehlers Danlos Syndrome and decided to use her OT training and her condition to benefit others. I think there might be some material on her website that you can use when preparing material for schools.

I sigh as I write this because schools can be such hard work when people can’t see the problem. Anyway check out Michelle at hypermobilot.com.au

Again my thanks for getting in touch and please feel free to drop me a line whenever you feel like it. I have a friend with 13 year old twin girls who have EDS – she’s helped me understand some of the challenges. All the best.

Regards
Julia

It was great to find this page, as we are also having trouble with the school recognising her additional OT requirements – because she looks fine.

My DS was diagnosed with Ehler Danlos Syndrome Type 3 (Hypermobility) last week.

I read the section on here about how you feel when you get a diagnosis and it was so relevant. I am relieved my concerns were taken seriously and I wasn’t dismissed as a ‘neurotic mother’ but on the other hand I now need to come to terms with both my DS and myself having EDS.

He has a referal to a podiatrist and a physio and I hope we can begin to see some pain reduction for him.

Jules

I really appreciate you sending in the descriptive words. Can you please send me an quick email when you get your diagnosis so I know which type of arthritis the words best describe.

I was very moved by your words. It reminded me of so many moments like that with my own daughter.

To have your child suffering and not being able to take the pain away is so tough. It is a sad, exhausting, frustrating torture for a parent.

I hope through this website and your own hunting that you find others. Being part of a group of people managing similar issues is like fresh air.

Please also remember that your words are a comfort to others. People recognise what you are talking about and it lightens their load just a bit.

I hope all goes well.
Best wishes

Julia

At a birthday party today he stopped playing and came and sat with me because he ‘felt tired’ when I asked where he felt tired he said ‘all over’

He isn’t diagnosed yet but has an appointment with a rheumatologist soon.

Thanks for joining this online conversation. Already you have probably made several other mothers feel less alone. Connecting up to others can be so liberating for us and for our children.

We have recently started seeing a specialist pain clinic and I am amazed at how that has improved things. It seems easier to get help and support for my daughter now see is older. As the Mum of a child in pain I found very little support. Had to organize it myself -even finding one other family with similar issues was really helpful.

Please know that your experiences are valuable to others and you are not alone. It is heart breaking and you have every reason to feel hopeful about the future. Our understanding of pain and how to work with it is moving at an incredible pace. I feel confident your son will benefit from this research.
All the best. Julia