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In need of support - Daughter has hypermobility syndrome

KayeKaye Posts: 3Member Listener
Hello I've joined this board because I am in need of support.  My daughter one week before her 17th birthday finally got to the bottom of the problems she has with her hips.  She was diagnosed with Joint hypermobility Syndrome/hypermobility syndrome/ ehlers danlos syndrome - hypermobility type, which are all names for the same thing JHS/HMS/EDS-HT are the abbreviations.  Basically all her joints and her insides are over stretchy, which means that at any given time she can spontaneously partially dislocate any given joint.  Her insides are a different story, and not something I wish to bring up here.  The upshot of this diagnosis was here it is, go away and get on with it, without any support around my daughters mobility issues, and due to her age she falls through the gap between children and adults.  At 17, she is obviously over 16, so GP is bound by confidentiality (therefore won't tell me things that I may need to know, fortunately my daughter will!) All the things on the Council deal with School up to the age of 16, then nothing until age 18 when obviously she will come under adult services.  I had to go to the Council and ask why there is nothing for those young people who are studying elsewhere, or doing apprenticeships aren't covered, as timetables etc are irrelevant to them.  We have been put with the Disabled Childrens Team, but I have had to fight to get an OT assessment for my daughters needs which finally happened on Friday and was useful.  I've just sent off the letter requesting a PIP form, (that was nightmare, as because she is over 16, I couldn't ring for her for the form) the DWP opening hours are from 9-5 and my daughter is at College and has no time to ring, plus her NI number is here!!  It was easier to try and do it by post.   I would welcome any help with the PIP form when it arrives (have contacted CAB 3 times by email and still have had no response at all)  I'm not even sure my daughter will qualify, but given she is in constant pain, chronically fatigued, and her hips are the weakest joints in her body therefore mobility can become an issue.  We invested in crutches for her and have borrowed a wheelchair for those days when just moving becomes too much.  I have been very surprised at how little support I have had from anywhere, the only support I've been given is what I myself personally have asked for...including the OT assessment for my daughter.  Not surprisingly all this has taken it's toll on my health which I am now trying to address and one of the things I was told was somewhere like here may be able to take the pressure off me a bit, so I can vent.  I'm sure many of you know how I feel.  For more information on my daughters condition check out hypermobility.org
Thank you for getting to the bottom of this!  I need my girlie to be as independent as possible before she hits 18 in March xx

Replies

  • Scope_rosieScope_rosie Posts: 133Member, Helpline Chatterbox
    Hello @Kaye and a big welcome to the online community.

    Sounds like you've been through the mill getting this diagnosis and in trying to access support.  It can be really tricky to get stuff put in place for a young person when they are 'between' children's and adult services; so you may find you need to be really clear and insistent about what you need-- which of course is rather difficult when this is all really new and you don't necessarily know what's out there!

    If you wanted to give us a call at the helpline I'd be happy to have a chat with you about how things are going and guide you on anything you're unsure of.  For starters, we can have a look and see if we can find an organisation to help with the PIP form, and I can talk you through some of the laws that cover children and young people from an education and social care perspective.   We are on 0808 800 3333 9-5 m-f; or alternatively you can email us on [email protected] anytime and we respond within 3 working days.  Just mention your username and that you've got in touch following a chat on the Online Community :)


    -B






  • lottie42lottie42 Posts: 3Member
    Hi there. If you belong to Facebook we have a closed community group you can join on behalf of your daughter or she can if she has an account. It's called Ehlers Danlos Support Group (will check) and is very helpful and supportive and you will find honest information from other sufferers and family members. 
  • KayeKaye Posts: 3Member Listener
    Thanks Beth and Lottie 42.  Beth I will be in contact on Monday (10th Oct) by phone.   Lottie 42 the EDS support group I think my daughter is already on, so therefore will be difficult for me to ask questions without being seen as interfering, but thank you for the suggestion.  Kaye   xx                                                                                                   
  • Jean EveleighJean Eveleigh Posts: 20Member Whisperer
  • KayeKaye Posts: 3Member Listener
    Hi All especially Beth, I'm really sorry about Weds 13th Oct.  unfortunately I had a phone call informing me that my Mother in Law had had an accident and they were awaiting the ambulance.  Long story short, luckily no hospital admission and at 86 she was very lucky to get away with concussion and a graze to the back of her head.  Everything is now back to normal (whatever that is!) and she is absolutely fine. I hope that explains an empty phone call.  I will phone the helpline again on Monday as I am feeling very alone at the moment, or if I have time, tomorrow.   Thanks for listening Kaye xx
  • clastoneclastone Posts: 1Member Listener
    Hi Kaye,

    Just here to offer some support, as I am 29 and was diagnosed with Joint Hypermobility at 21, and have struggled to get effective treatment and support for this since, so I understand your frustrations.

    I can't offer advice re: PIP as I have not tried to claim this, and regularly do not identify as having a disability despite knowing this is a long-term condition, as it has not debilitated me to the stage that I cannot carry out day-to-day tasks so far.

    However I do have chronic back pain and joint problems, which I have learned to cope with as a result.

    What I can offer in terms of guidance/emotional support are:
    - Living with a condition there is no 'cure' for can feel scary at times, and although on a day-to-day level I have learned to ignore it, when I do attend doctor/hospital appointments and am faced with the prospect of this condition continuing to affect my whole life, it can feel overwhelming. I always appreciate having a member of family there for emotional support at the most important appointments, so I am sure your daughter may appreciate this too.
    - Re: insides - I am also prone to stress-related conditions like IBS and shingles. I was introduced by the Persistent Pain clinic at St. Barts to the 'Gate Control Theory' of chronic pain, i.e. that emotional factors can increase your perception of pain. Put simply - the happier you feel, the less you feel chronic pain; the worse you feel, the worse it gets. This correlates with my experience - the more stressed I am, the worse my back pain tends to get. So I recommend ensuring self-care and positive mental health as a coping strategy for managing chronic pain.
    - Re: treatment - I have been referred back and forth to physios over the past 5 or so years, and although effective physio has helped to reduce the worst of the effects of the conditions (e.g. waking up in back pain at night) it has not got rid of them. I am currently in the process of seeking a referral to the UCLH Hypermobility Specialist clinic, which is proving notoriously difficult - they require a referal directly from a consultant at your local rheumatology department, and make sure it has plenty of detail/they check the referral requirements first on the website, as mine has been rejected twice because of these two issues - causing a 12 month delay so far. However, given that it's a life-long condition, I am determined to seek out a specialist and get the best advice/treatment I can. If I do manage this, I would be happy to let you know if it works!
    I also highly recommend Pilates - which builds your core strength, rather than Yoga, which I found was giving me neck sprains due to over-stretching. Cycling is good for fitness as the weight is not on your joints. My physio also recommended weight training - again good for building strength. Start very small, and build up - don't overdo it, you will regret it! But anything you can do to rebuild your muscle strength, to compensate for joint-looseness, will help.

    I don't know about your daughter's case, but my symptoms only manifested after a prolonged period of low exercise and bouts of poor health e.g. tonsilitis, which meant I was laid up in bed for up to 2 weeks at a time. It seems that this led to a deterioration of my childlike muscle fitness, that allowed the hypermobility to become an issue. It is possible to live with hypermobility without pain and difficulty - though that is difficult to believe right now, and I'm sure it depends on the severity of it! I am about a 8/9 on the Beighton Scale. But I hope to get back to a level of physical fitness where it is not/less of an issue.

    I hope your daughter is doing well now, and that this information might be useful to you! Feel free to get in touch if you'd like to speak more.

    Claire
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