Ehlers-Danlos Support UK
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Hello

Hi newbie here!

My 15 yr old daughter was diagnosed with hEDS earlier this year....still finding our way in these uncertain times and hoping things start to improve for her soon. The last 2 years have been difficult, she is more or less off school and her world has become so small at a time when she should be stretching her wings....not literally of course lol!

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Hi and welcome,

Diagnosis is a major achievement so well done - so many are misdiagnosed. I have a friend who ticks all the boxes but won't believe she has it because her drs have given her (and changed) other diagnoses over the years.

I highly recommend this site and this book (no I don't get royalties):

edhs.info/home

redcliffhousepublications.c...

which is useful for when you are visiting GPs who often have only sketchy or plain wrong understandings of hEDS.

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Hello Sam and welcome.

I'm pleased you have a diagnosis for your daughter as it is usual to suffer for years not knowing what is wrong. Hopefully this will help you, your daughter, and family understand and learn to manage the condition. There is advice and support from charity websites, and Facebook groups. You're not alone and we're glad to support you on here.

My son is now a young adult with hEDS ( I also have hEDS) and he has suffered with symptoms all his life. At the age of 7 he was diagnosed with ME - myalgic encephalomyelitis- and was severely ill. Doctors had no clue what to do. He later became partially paralysed for about 4 years and in a wheelchair... I don't know how we got through that time, It was hell.. but somehow you just keep going don't you, because you have to.. Gradually he got better from the worst of it, with rest and by us shunning so-called specialist interventions for ME -which are now not advised, although still go on😖 - but he still suffered with pain, fatigue and symptoms. These were finally diagnosed as hEDS last year ( I also got my diagnosis).. He had successful jaw surgery this year for an under developed jaw ( a marfans trait).. and life is carrying on🙂...

Because my son was so Ill all the time, he never got the opportunity to bond with his peers like children/teenagers do. This was due to missing school or only being in school for short bursts, and then home schooled for the last four years of school life..He missed out on so much that it still breaks my heart to think about.. It's been heartbreaking to see him upset for having 'no friends' and 'not able to play' or 'go anywhere'...He has become depressed at times, and does now suffer some anxiety and ocd.. Despite me having done- and doing- everything in my power to care for him and make him happy, he has been -and is- the one dealing with this unrelenting condition physically and mentally. Being ill myself, this situation has been- and is- a challenge, but one that has become, 'our normal'🙃..At times all you can do is 'be there' and give support. I will never stop being there for my son, and he is now there for me too. Having support makes all the difference. My son and I are 'in this thing together'🙂

when my son was 18, feeling well enough -but of course still struggling with pain, fatigue and other symptoms- he started college. He was determined to be part of student life. It was difficult, but he was able to enjoy being in the presence of others of a similar age- his dream- and do the course. He did well, passing the course and going on to the higher level a second year.The college were understanding and he was able to work from home during periods of illness. This was frustrating for him because he really wanted to be at college rather than at home, but he adapted.. It was all a massive negotiation, with trying to keep symptoms under control. learning to be energy efficient, and minimise any pain in order to be able to attend, socialise and study. But he did it!🙂 all because he wanted to, and the effort was worth it.. I was so happy to see his 'sparkle', and very proud🙂..He had to take the year out for surgery, but he's hoping to return.

I can't say it gets easier, but you do begin to accept the situation and learn how best to live with it...Learning everything about the condition so you can educate Doctors and medical professionals is key to receiving the correct care. Learning to manage the condition in order to not 'crash' and suffer with increased pain etc during and after an activity. Resting when needed and wanted helps to replenish and recharge. Wear supports, splints, orthotics where necessary. Hopefully you have a good pediatric team who can provide support to the school senco in relation to anything needed to allow your daughter to access education, whether in school or at home. Physiotherapy is advised to strengthen muscles to protect joints, but this is specific to the condition as damaged joint must not be made worse. We take daily vitamins. I have bowel problems - related to hEDS- so I eat a gluten, wheat-free diet which has hugely improved the bowel symptoms.

ehlers-danlos.org and hypermobility.org has printed info and you can ring them for any advice.

Very best wishes to you and your daughter.

Get in touch if you would like any support or have any questions, I'm happy to try and help. xxx

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hi, we are in the same boat, dd15 just been diagnosed (and vindicated!) after many years. We bit the bullet a few years back though, and we home ed. A lot of hEDS do. The change in her is remarkable. She's still not so confident (being told you are a phoney and a fake for many years will do that to a child) but she's getting there. She was failing quite dramatically at school and was starting to be absent more that at school so missing loads. However, the change since she left is dramatic. We work around her pain/brain fog/headache and she has been out of school for 3 years and already has 3 GCSE's (maths grade A, physics A, Human biology B) she's took 4 more this year.

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