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We want to hear from you: please tell us about your experience of the online community.

Hi, I am a new member with EDS and a daughter with Hypermobility Spectrum disorder

Honorade

Hi everyone, I am a 50 year old lively lady. I decided to join this forum as I have been significantly affected by my condition Hypermobile Ehlers Danlos. My 14 year old daughter had a diagnoses of Hypermobillity Spectrum Disorder and is in severe pain as her neck is hypermobile. We have received no help from the NHS. I am looking for support, friendships and suggestions with pain management and pip application. I am looking forward to ‘meeting’ you!

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janer1967

Hi I replied to your other post and also this will get your intro bumped to make it more visible

L_Volunteer

Hi @Honorade. Welcome to Scope’s forum. It is great to see you have joined us.

How are you today? I hope you are well but if you need anything, please don’t hesitate to let us know.

Thanks for sharing a little bit of information with us about yourself. How are you currently managing with Hypermobile Ehlers Danlos?

Sorry to hear your daughter is struggling at the moment with Hypermobility Spectrum Disorder. That sounds really difficult, especially with the severe pain as her neck is hypermobile. Does she currently have any support in place for helping her to manage her Hypermobility Spectrum Disorder (and her pain in particular)?

I am aware that you have said neither of you has received any help from the NHS, unfortunately. Whilst they are best placed for medical support, I am aware they are not the only form of potential support. Though, if you would like to tell us some more about the barriers you are both experiencing in relation to accessing support from the NHS, please feel free. We will happily help you to navigate it if we can.

Unfortunately, we are unable to provide suggestions for pain management here since we don’t provide medical advice. Instead, we can only listen to you and encourage you to speak to your GP and medical team in the first instance. Though, I am even more convinced that you will be able to find support, friendships and suggestions for PIP application. Is there anything, in particular, you would like suggestions for with regards to your PIP application? I think we are a supportive and friendly community and I hope you will find the same.

Look forward to seeing you around on the forum again soon. Please feel free to keep us up to date with how things are for you and your daughter, we are all here to support both of you

chiarieds

Hi again @Honorade - may I say that if you have a diagnosis of the hypermobile type of Ehlers-Danlos Syndrome (hEDS), then your daughter will have this rather than Hypermobility Spectrum Disorder (HSD) as she also has problems with hypermobility. Whilst the 2 disorders have much similarity, you will both have the same genetic disorder, not different ones. It's difficult, as both are down to a clinical evaluation, as there isn't, as yet, a genetic test confirming hEDS, but you will both have the same disorder.

It's also very difficult to evaluate hypermobility in the neck, as there are no known studies evaluating what is normal in a hypermobile patient such as one with hEDS at the craniocervical junction (that between the neck & the base of the skull).

I have done much research in the past 20 years, tho intermittently. The best info I've learnt is from USA Drs, feeling our UK 'specialists' are at least a decade behind.

I would suggest, if you have a consultant's letter confirming you have a diagnosis of hEDS, that you take this with you to your next consultation with your GP. If you have any family history, your parents, etc., then include that too.

@L_volunteer - I would politely disagree re: pain management; both members of the Scope team & I have given links about this previously; indeed you & I mentioned this briefly last September: https://forum.scope.org.uk/discussion/64007/away-with-pain-website#latest However, I only give general advice about this, as do the Scope team; in my own case for example, exercises that would cause no harm, as I don't know the person's specific medical history. Several of our members have also suggested pain management clinics from their personal experience/knowledge. This is not giving medical advice....if in doubt, please consult the Scope team.

From my personal experience, & later research, I did find that those with hEDS found little benefit from non steroidal anti-inflammatory drugs (NSAIDS), & my GP said that hEDS is a difficult condition to treat pain wise.

Honorade

@L_Volunteer, thank you for your message.
Firstly, maybe you can explain to me how I can easily answer back a message?
We have just had a first conversation with a triage physio at Evelina Hospital in London for my daughter. They might help with physio, psychologists and liaising with the school.

My daughter has scored 5/9 on the Beighton score which actually would suggest that she also has HEDS. I am concerned she might have the myopathic EDS has she has some traits and her struggles are a bit different than mine as a child, however I do not know who could help to diagnose her.

Doctors don’t understand the benefits of a diagnosis but that could mean having PIPayment, psychological support, Bluebadge…

In terms of PIP I am looking for the types of letter I should ask (and get a template letter or sample letter) from which doctors. I need both applications to be solid as I do not have the time and energy to appeal or re-apply. I need it with a high score in order to have the Bluebadge first time.
regarding pain management (besides meds), we are using mindfulness apps, trying every pillow on the market, and we are now experimenting with stretching. I would be interested in pain prevention really, for instance, gardening equipments are not adapted to my needs. I find cutting dead flowers and planting painful. Any tools available in the market for people with hands issues?

thank!

L_Volunteer

You are welcome @Honorade. It is the very least you deserve. Thank you for your response.

Yes, of course, I can explain to you how you can answer back a message. Do you mean on Scope's forum or another platform? They all vary with how you can answer back a message so knowing this would help me to help you.

It is really positive to hear you have just had the first conversation with a triage physio at Evelina Hospital in London for your daughter. Even more so that they might help with physio, psychologists and liaising with the school.

How are you feeling about the Beighton score suggesting that your daughter might also have HEDs? In order to get help for a diagnosis of myopathic EDS for your daughter, you would need to speak to your GP in the first instance. If the GP wishes to, they can refer your daughter to your local genetics service for an assessment. For more information, please see the NHS's website. This might also support you with symptom management.

I can hear it is frustrating for you to see the benefits of a diagnosis but your doctors not seeing the benefits of a diagnosis. One resource you might find helpful is the Ehlers-Danlos Support UK website if you haven't already discovered it.

Unfortunately, PIP is not an area of my expertise. This means I can only hope other people with more knowledge in this area are able to respond to you soon. In the meantime, is there anything, in particular, that is causing you concern with the PIP application? We have a lot of community members who would happily support you through this, especially if you have any specific questions or concerns about the PIP application at the moment. Again though, this might be something you wish to discuss with the Ehler-Danlos UK helpline team as they specialise in Ehlers-Danlos.

I am sure there will be things on the market to support you with your gardening. You might want to search for the tools and add occupational therapy or assistive. This narrows down the focus to make it more tailored to your needs.

I hope this helps and I will look forward to hopefully hearing from you again soon