Here we answer some of the most common questions we are asked on our helpline.
My child isn’t walking yet, what should I do?
Late walking is not uncommon in hypermobile children – some children benefit from exercises supportive shoes or orthotic insoles, but the vast majority will catch up with their peers over time. If you are concerned this is something you should discuss with your health visitor or GP.
Can I get benefits, and can you help me apply?
If your hypermobility significantly affects your ability to walk or carry out daily living tasks, you might be eligible for Personal Independence Payments (or PIP). We suggest that you contact the Citizens Advice Bureau or the ‘benefits and work’ website for advice for further information (Please note that you do have to pay to see all of the ‘benefits and work’ documents.)
Not everyone with an HMS will qualify for PIP.
The HMSA cannot help with individual benefit applications.
How do I make school understand?
Firstly, check out our 'educators guide' (can also be read online in the members area) and the Schools Toolkit - read it through yourself, then ask the teacher or SENCO (depending on the school) to read it.
We always advise approaching teachers with respect, and saying something along the lines of “I know you're really busy, but please could you find time to read this. I think you'll find it really valuable and it will help you understand what my child is coping with and how to support them.”
If the school still isn’t listening, then try contacting your 'Local Parent Partnership'. It is a free local authority service set up to help parents of children with special educational needs due to a disability.
Is my hypermobility syndrome a disability?
Some people are disabled by their hypermobility, other people are not. Symptoms can also change over time, so some people may go through periods of being disabled and periods of not being disabled by their condition. It all depends on how you personally are affected.
I’ve just been diagnosed. What should happen next?
This depends on individual circumstances. After diagnosis the focus is on symptom management. Often you will be referred back to your GP –who can then refer on to physiotherapy or podiatry / orthotics, or pain management.
If there are symptoms which your GP is unable to manage, then you might be referred for more investigations or specialist input (for example with more complex digestive issues, or dizziness and fainting).
Once you are diagnosed, there is a lot to learn because so many of the things that can help involve ‘self-management’.
We recommend having a look at our website and the ‘living with guide’to help you start to understand your condition and some of the things that might help. Our members groups are also a great way to get support from people know what it is like to live with a hypermobility syndrome.
My child keeps waking in the night with sore legs, what should I do?
This is very common in hypermobile children – especially if they have been more active than usual.
One of our helpline staff gave the following advice: “For me personally as a child, warm bath, one of my parents rubbing or kneading whichever part of my legs were sore and a pillow between my legs or under my knees helped massively. Being allowed to fidget while a story was read was super important too instead of being made to sit still."
My pain and fatigue are severe, does this mean I have one of the more serious hypermobility syndromes?
Not necessarily. Some people have very mild pain, others very severe. It isn’t linked to the type of hypermobility syndrome present. For example someone with JHS or HSD can have more problems with pain and fatigue than someone with classical EDS or vascular EDS –and viceversa.
If you experience anew pain or symptom it's worth seeing a doctor to get it checked out, just in case it's something else, or in case there are specific things you can do to manage those symptoms.
Why won’t they diagnose my child?
Children are more hypermobile than adults, and many of the symptoms of connective tissue disorders develop over time. Some hypermobile children have problems as a child, but grow out of them. This means that hypermobility syndromes are often not diagnosed in young children unless there are specific markers present for rare connective tissue disorders. Rather than give your child a diagnosis that may turn out to be wrong, it is considered better practice to recognise the hypermobility and manage the symptoms your child has, with an awareness that it may turn out to be a connective tissue disorder.
Once your child has been recognised as hypermobile they should be able to get any referrals they need (for example physiotherapy or podiatry), and the information for children on our website may also be helpful.