Little understood. Little talked about. Often belittled by the medical profession hypermobility syndrome is a condition that features joints that easily move beyond the normal range. Hypermobility affects the whole body both externally and internally and involves pain. In this post I am explaining the hypermobility syndrome symptoms, as my daughter has experienced them.
Hypermobility in children
Meet my children, Erin is six and has already been in theatre seven times she was first diagnosed with hip dysplasia aged 22 months and spent months in spica cast. Erin then went on to be diagnosed with hypermobility syndrome.
Chloe is sixteen numerous broken fingers, dislocated knuckles, whiplash injury and soft tissue damaged. Growing pains, tummy upsets, fatigue. Osgood Schlatter disease and regular physio when she hurts.
Dylan, 12 diagnosed with Osgood Schlatter disease and Severs disease.
Joint hypermobility syndrome hurts despite it being an invisible illness. HMS is also known as Ehlers Danlos syndrome hypermobility and is characterized by weakness of the connective tissues of the body.
Ehlers Danlos syndrome hypermobility is not rare but its implications are not often understood and explored. It is one of those invisible illnesses that affect sufferers in different ways the hypermobility syndrome symptoms are varied and affect each of my children differently.
It does not help when on a This Morning there is a feature on sick notes and teachers making children do PE despite a note from home requesting the lesson is sat out.
A worried mother rang in and explained how her child has hypermobility and aches daily, she explained that in damp weather the joints are affected and PE hurts. The ‘specialist’, a GP, retorted that hypermobility is nothing to worry about. The mother was made to sound neurotic and a worrier. The viewer’s left under the impression that Elhers Danlos Syndrome Hypermobility is nothing to worry about, nothing to be concerned by.
This does not help my girls. I could be that mother that had rung in.
Hypermobility does hurt, hypermobility syndrome does matter.
My Erin, she hurts, her feet hurt, her ankles bend too much, her toes and foot bend more than they should.
She wears orthotics that help her walk in a straight line. Her little fingers and wrists hurt when she grips a pen for too long. She falls off chairs in class because her core isn’t that stable. The right side of her body weaker than her left these are the hypermobility syndrome symptoms few talk of.
She has seen healthcare professionals and all agree she has hypermobility syndrome, the cause could’ve been because she was born with DDH. That could be why her hip subluxed and why she needed major surgery.
Erin spent 24 weeks in a spica cast from ankles to chest to repair her hip. A hip that dislocated as her joints are too lax. A socket that did not develop because her femur was not in situ. Belittling hypermobility or Ehlers Danlos syndrome hypermobility is belittling what my then two year old went through.
She didn’t walk until she was 20 months.
My sixteen year old plays county and club hockey but she gets injured regularly. She has broken fingers from catching a ball, she got whiplash from lifting weights where she overextended. She currently needs physio on her neck for chronic pain.
As a teenager, I too had many of these problems and very few listened. There has been some progress at least there is a name for it now. The labels I was given were not nice and I was often dismissed. It made things worse for me and led to me suffering from depression which I wrote about in a post the girl who got sick, really sick.
Therefore when I hear doctors on a national TV program dismiss hypermobility I despair. More awareness is needed. More empathy required.
Hypermobility hurts. Hypermobility does matter, it matters a lot to me and my girls.
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45 Responses
Signed and shared, what a disgraceful level of ignorance. (Yes, I’m hypermobile, I was born with a dislocated hip too.)
I have a little boy with hyermobility, I was told about it when he was just hours old and was told that it is something that he would learn to live with !! He will be two at the end of the month and still isn’t as yet walking. He doesn’t fall when trying to but chooses to sit to with I cant help worry that this is due to pain which breaks my heart as he cant talk to tell me. I have looked on the Internet for hours but can find very little information, even on a recent visit to my local doctor (for something else ) he was asking me questions about it and even went on to push his fingers back to see how far they would go ( which of cause made him cry )
My grandson who is now 6 has this complaint. He didnt walk until nearly his 3rd birthday and sounds very much like your little one,he would choose not to try. However try not to worry as he now is absolutely fine and unless you knew him when he was younger you would never know he had this complaint. Infact he is always being complimented about how good he is at sport.There is light at the end of the tunnel and not all children go on to have long term problems.
This is so lovely to here because my daughter is coming 4 an she will only take a couple of steps on her own hopefully it’s just her confidence an they she can walk with out holding my heart feel for her pain 🙁 x
Shared and already signed both mine have issues my mum still thinks to this day I’m a liar & my health isn’t as bad as I make out nor is my kids, despite others in the family having it bad she believes them, I know first hand how damaging this could be I hope we get the awareness we deserve x
I have hypermobility and my God does it hurt, my isn’t has bad has your girls but I’m is in my hands, shoulders, hip and back, and I have the worst pain, and college doesn’t really understand why it hurts and why I want to stop writing 🙁
Your college should have a student support department for class support which means they can make a personal learning support plan which will advise tutors on this. Also they can put strategies in place maybe requesting all lecturers provide copies of notes, or a laptop for in class work. It depends what support is suitable but you should go and talk to them they might be under equality or I’m sure the reception can guide you to them.
My son has hypermobility and couldn’t walk till he was 21 months old and he complains bout his legs hurting and constantly falls as his left side is weaker than his right, it should be more looked into as its not nice watching your child struggle and be in pain, my Harvey is now seven and still no help…..
This is heartbreaking! I didn’t see This Morning, but it’s amazing how these programmes can make these flippant/ throwaway remarks based on very little research, which then get taken as the gospel truth by millions of people. Well done to you for raising the issue and speaking up for sufferers everywhere, as well as your own amazing girls.
I sympathise with you and wish you success in getting an opology.
I have a label too, Bipolar disorder another invisible condition.
This morning didn’t do people with my condition any favours either. After the Kerry Katona interview Bipolar is now dismissed as an excuse for bad behaviour or ” The new celebrity illness ” so those of us with this cruel mental health condition , we are forced once again, to carry our condition around like some dirty little secret……….. So much for media highlighting invisible illnesses !!
My son has this. In the past week alone he has dislocated his knee half a dozen times and his shoulder twice whilst swimming. It is very hard to watch him in pain and it is just getting worse.
This sounds like Ehlers Danlos type 3 ( hypermobiity) as while hms effects the joints, eds also causes havoc with internal stuff like bowels and tummy which sounds like your daughter? It’s worth asking your doctor/rheumatologist to investigate because eds can effect the heart. Doctors are still deciding if the two syndromes are in fact the same, but in the meantime I would ask for a echocardiogram to check the heart valves haven’t become slack. Good luck
I am glad someone mentioned Ehlers Danlos Syndrome, and was wondering what was wrong that the Drs hadn’t suggested it! In saying that I was 38 before I heard of it. Finally diagnosed last year at 45. It has also been associated with Autistic Spectrum Disorder (ASD), extensive bruising, excessive bleeding, heavy debilititatong periods, premature rupture of the membranes, scarring, slow healing, Arnold Chiari Syndrome, osteoarthritis, osteoporosis and more.
I have this, as does my mum, some if my siblings, all 7 of my daughters (including the youngest who also has Down Syndrome and Cerebral Palsy).
Hi Carolyn, thanks for the comment – I have read much about EDS and would say that Erin has it but our current diagnosis is HMS and I know many see it as one and the same. I just find that she is treated for each symtom and no one ever looks at the bigger picture. I wish GP’s were more open to understanding that EDS111 is not as rare as it is claimed to be.
I was thinking EDS III also.
I am disgusted that this happened yesterday and will be signing the petition, as already briefly mentioned to you we are struggling to get anyone to take this seriously. My daughter has been in a boot and on a crutch (although she can’t weight bear on her wrists so that brought it’s own problems) her school moved her lessons for her but now she’s walking without them they won’t move the lessons and she can’t make it up the stairs. She sees a wheelchair in her very near future. Weirdly she has never broken or dislocated anything but is in constant pain, affecting her concentration and sleep. Let’s hope we can do something to change this x
How does your daughter feel about going to schl in a wheelchair , my 11 year old is refusing , she I in year 6 and missing lots of her sats , crutches hurt her arms and wrists too , she may need counselling to come to terms with her new disability label , breaks my heart x
This mornings dr dawn issued a appology 2 hrs ago not good enough.
I had never heard of this before, so popped across to learn. Definitely not something to be dismissed. xx
Our little girl is hypermobile also and wasn’t born with a dislocated hip, but it did develop at a later stage, so she also had a hip spica cast for four months. She took her first steps age 26 months. Well done for raising awareness x
Great post Emma, and I’m sorry your girls have suffered so much x my daughter has a permanent excusal from people. P. E. as I don’t trust the school to keep her from harm, she has a diagnosis of Elhers Danlos Syndrome and has been to theatre 5 times so far because of it. I really disagree with the forced P. E. and I agree that so many are ignorant of the problems associated with hyper mobility.
Thank you for spotting this and doing something about it!! I constantly battle GPs and people who do not understand why my 8 year old has trouble walking and can not hold a pencil and why my husband is permanently in a neckbrace and needs a wheel chair. Yes hypermobility hurts and can be very difficult to live with. Thankfully not everyone that is hypermobile has the syndrome but that should not belittle what others who do go through. Petition signed x
I suffer from hypermobility too. Have since i was younger. Not as bad as your girls but i do feel the pain. I have constant pain in my legs and my right side is alot weaker.
Well done for raising this and letting others know that this illness can be very bad and painful.
I am absolutely disgusted about the level of ignorance over EDS shown by a supposed doctor! My daughter was diagnosed with EDS 6 years ago. She suffers on a daily basis and EDS affects and limits her daily life every single day. She is in constant pain in all of her joints, sometimes excrutiating pain which keeps her awake all night, despite pain relief, semi-dislocates her knee on an almost daily basis, struggles with serious bowel problems, feels exhausted all the time, can’t walk with her feet flat and even at the age of 14 has to walk on tip-toe due to problems with her tendons and ligaments in her feet. We have now just disovered, after many tests, that EDS has caused abnormal formation in her breasts which means she may have to have surgery in the very near future. I am proud to have signed the petition! And according to a ‘doctor’ there is nothing wrong with her………
I wasn’t diagnosed until I was in my 20’s when I was getting terrible pains in my hips and knees all the time. Then when I saw a specialist he told me in seconds what the problem was. I have issues with my knees, elbows and neck and have to be very careful with my posture. I feel for your daughters x
Glad there is a name for something i was called having growing pains the hospital I attended has a child only when I went to have some Physio on my ankle 30 something years later was I told it was hyper mobility, that’s my joints move to freely
I recall walking with my parents when i was 11 and my body gave way and I ended up in a heap on the floor not sure what had happened, really painful knees that would only resolve after resting in bed the night what I have read my hyper mobility is manageable with pain relief. It did seem to improve after having my first child making me wonder if hormones had something to do with it,
I hope this helps in some way to having this understood more
Unfortunately it is not just hyper mobility that gets this kind of answer about the pain which your girls suffer. I have suffered with endometriosis since I started my periods at a very young age of 9 it took nearly 10 years to get a diagnosis during which time I was in a lot of pain 90% of my waking hours. Periods crimpled me and would make me very sick for days on end, I missed a lot of school and at times was questioned over the truth of my pain. Many medical professionals told my mum my tummy pains were due to anexity and that I needed counselling others said I was faking. I understand how frustrating having an invisible illness is. And I hope “this morning” do the right thing and not only apologise for belittling your children’s and many other children/teenagers and adults battles and also help raise some awareness on the horrid illnesses that people can’t see. Petition signed. X
Thanks for sharing your story I must admit I have never heard of Hypermobility. Children should not have to experience pain and it is obviously a big deal if they are especially when suffering serious injury. Your 16 year old sounds like a real inspiration, pushing through pain to do sport and be active. I find many conditions are ignored or shrugged off. I have an erbs palsy in my left shoulder, when I was at school I couldn’t do my buttons because I had little dexterity. The teachers wrote home to my mum saying that I should be taught how to do it, completely ignoring the condition that makes it difficult to do so. Happily signed I hope you get the apology you deserve.
I use to be double jointed, as I get older things tighten up, I have a son who has hands that are double jointed, you have my support
My oldest boy walked at 10.5mths and is fit and active, if a little clumsy at times. Yet as soon as he started school, it was immediately apparent that his ‘can’t run very well’ is actually ‘finishes cross country so long after the other kids that no one realises the race is still going’. His legs just looked uncomfortable and after videoing him walking, I realised that their position was all wrong. He saw a podiatrist in Dec who diagnosed hypermobility in his leg joints, weak core and flat feet. He now has inserts which are adjusted and changed as his leg muscles develop in all the right places and at last he runs.. Well, like a child who is running. To see him suddenly straighten up and run like the others is amazing and I’m so glad there is light at the end of the tunnel. But he complains endlessly about how uncomfortable it is writing at school, and now you’ve set me thinking. I’ll take him to see someone about the rest of his body. Thankyou!
Great post, I signed the other day. I have Ehlers Danlos syndrome – I’ve just spent another morning today in x-ray, this time for what they suspect is a broken/dislocated bone in my foot. I wish, when people think it’s okay to belittle EDS/JHS, they’d experience just for one day what we go through. The chronic pain, the IBS (I had a bowel obstruction as a baby that almost killed me, also believed to be due to Ehlers Danlos), the headaches, the inability to run around because you never know what’s going to dislocate next, dreading physio appointments where you’ll find out just how much you’ve deteriorated – I’m 21 and could need a knee replacement before I’m 40 – and the absolute worst part is realising that my almost-two-year-old daughter shares so many of the early symptoms. I see her blue sclera, the way her joints click, the way her knees bend backwards, and the guilt of knowing that I passed on this condition to her is awful.
We need more awareness of the condition – not for people to have their symptoms written off as “just hypermobility”.
Hi Emma,
I have signed your petition and I truly hope this provokes some response. Your and your children’s story resonates with me. At the age of 43 I was finally diagnosed with Ehlers Danlos type 3 with features of classical EDS too. In hind sight they diagnosis was obvious to the correct specialists – unfortunately I’d been fobbed off and labelled as a hyperchondriac and depressive neither of which is true! I also have POTS, severe brittle asthma, early onset degenerative spinal disease and a host of other issues related to EDS. Whilst too late to make any significant difference for myself, a ‘positive’ is that both my children (21 and 13) were also diagnosed. My 13 year old son has quite frankly had a he’ll of a time with this condition. He has just had his 2nd shoulder reconstruction and has all the issues your daughters experience; daily subluxations or dislocations of various joints, poor core tone and proprioception, severe migraines, overwhelming fatigue, gross and fine motor control skills and difficulties in school with teachers who do not want to understand despite being informed of the diagnosis and how it affects him and who actually tell him off for fidgeting etc when he is in severe pain and can not sit still, get comfortable or concentrate. The whole issue of recognition and support around this condition in our country is shameful. Lack of adequate and appropriate media portrayal discredits the hard work and frankly the daily uphill battle and fight all of us, adults and children alike suffer daily with this condition. It offends and incenses me that some of the worst culprits in our battle to have our condition recognised are the very health professionals supposed to help us. I have shared the petition with my family ans friends who I am sure will sign it. Between our vast community of like minded and bodied people I’m sure we can change things. With best wishes and hopes that you and your family have a peaceful and hopefully uneventful week ie no injuries etc – a big ask/wish!x
Great post. Have signed and shared. Xx
I was watching This Morng when they did the item on PE & sick notes. I can understand why you think Dr. Dawn sounded dismissive of Hyper-mobility but I really don’t think this was her intention. I know several children with the condition & I myself had very ‘loose’ joints as a child & appreciate the seriousness of the condition but the item they were discussing was about PE & sick notes from parents. I think they were trying to stay on track talking about children trying to get out of doing PE when there’s little or nothing wrong with them, not about children who have genuine & serious conditions which I’m sure wouldn’t be dismissed by teachers who should be made fully aware. Unfortunately Dr. Dawn with the limited amount of air time quickly put it aside & it wasn’t explained to the parent they were talking about children that were fine todo PE. Unfortunately sometimes these things happen on tv (they are after all only human) but I really don’t think they were deliberately being dismissive of Hypermobilty. They just want children that can to be as fit & healthy as they can & be active!
Shared and signed! It really annoys me how it’s called the invisible illness! My second daughter Danielle has hypermobility and the pain and agony she goes through on a day to day basis is heartbreaking , it’s visible!!! Danielle was 5 before she was diagnosed but for 2 years before that I begged for help from doctors and hospital and was told it was my own mental state, it’s appalling that she went through so much because people wouldn’t listen, I hope they do apologise to every person that has hypermobility hopefully it might start to be taken as serious as it is , my heart goes out the all family and people diagnosed with hypermobility x x
Both of my children are hypermobile and since their diagnosis I also have been diagnosed. As a child of the 70s, I was constantly told it was growing pains and made to get on with things that caused such pain. sadly not getting physio and supports I suffered many breaks over the years.
Like you, I know its a big deal. It causes pain. Pain that children shouldn’t be in.
Comments like this do not help with awareness of invisable illnesses and just stigmatises the families who are affected.
My 4 year old daughter sounds very similar to yours in that she also didn’t walk until almost 2years, she has had a hip subluxation, surgery on her thumb, wears orthotics and is always in pain. She ‘W’ sits which we try to correct when she does, her balance is very poor too and is always falling over (sometimes causing more dislocations).
I worry for her future and how she will cope at school.
She has also been diagnosed with sub-cortical band heterotopia (PVNH) and Epilepsy ?
I was told years ago that I had hypermobility syndrome because I could touch both thumbs to my wrists and I had lower back pain at age 20. I can’t find a support group in NZ where I live. Now about 20 years on I have thoracic pain instead of the lower back now and neck pain. I feel joints are jammed and have seen physios, chiropractors,osteopaths but not much relief. Accupuncture helped a bit with pain and as well as I do yoga and in the past couple of years, swimming and gymstick. My posture isn’t very good as I find it hard to stop my shoulders rounding and my head had that forward position which I try every now and then when I look in the mirror to correct. Do other people have problems like this with neck and upper back and jammed joints? I’d love to hear from you. Helena
I am 24 and hypermobility I wasn’t properly diagnosed until 4 years ago! I have been suffering with pain all my life and always thought or was made to feel that it was just me and I was trying to get out of sports etc. After learning more about hypermobility I now understand that there is so much which I can relate to my own health. When I was born little was known about this condition my hips where very ‘loose’ as this doctor said so they advised my mum to put double nappies on to hold them in place. Now my joints dislocate on a regular basis I now am able to put them back myself and haven’t had to go to hospital, I have had many broken fingers just from simply catching a netball! I am continuously tired no matter how much sleep I get and now just a simple walk up to the local shops leads to incredible amounts of pain but still no one understands as much as friends and family try they still don’t understand how painful and tiring it is living with hypermobility everyday. I just hope people take notice and advice is provided to those that need it.
My goodness you sound like my girls. Erin had a dislocated hip and Chloe breaks from catching a netball or rugby ball too. I hope you are supported and listened too.
Thankyou unfortunately my GP still doesn’t understand last week I was told that I was lying when I said my joints were dislocating. When I then informed him about hypermobility and this is what happens his words were ‘well I don’t believe that but I don’t actually know anything about it’ he offered to do some research but that there wasn’t anything that could be done. I have now changed gp practices and hoping to get some more help and support.
I hope that as young children grow up they will be provided with more support with this condition.
Grayson and I both suffer and if I am honest I am pretty sure Addison will be diagnosed eventually. I have spent most my life in awful pain from HMS and feel so ignored and over 80% of the doctors I have had dismiss it.
Much love to your babies xxx
I hope it helps…I am on a great Facebook hypermobility page..Lots of sufferers and parents. Lots of advice and support.
Also I bought for my son from amazon pads that go on his crutches when needed so his wrists don’t hurt.
We are yet to get a formal diagnosis of his type.
Stengthening muscles is meant to be the best way to prevent injury.
This is so much like my three year old boy he has a dx of Hypermobility with ‘quiet marked joint laxity in lower limbs and hypertonic muscles’. He has just been sent to wheelchair services as he struggles to walk due to pain. But school nd gp don’t seem to understand his pain. Xx
Joint hypermobility syndrome is present in up to 10-20% of the general population as estimated, although we believe a number of 3%, which is often quoted in the literature, is often more accurate. There are several types of Ehlers-Danlos syndrome, and type III is known as the hypermobile type. Joint hypermobility syndrome and hypermobile Ehlers-Danlos syndrome are probably the same disease problem. The main clinical features of joint hypermobility syndrome include joint hypermobility and skin fragility. Widespread pain throughout the body, chronic fatigue, autonomic dysfunction and gastrointestinal side-effects are also present.