Main site/forum suggestions

[Englishgremlin1]

Photos yes - would be superb help.

I have not accees to the members areas yet as only just joined and password and things not through as yet.

Advice for physiotherapy would be good, things that help and the opposite.

More on accessing help perhaps, things like how to get to an Occupational therapist, advice on applying for DLA and blue badges etc.

I like the tips section - please keep this!!

[Kayzee]

What about a discription od what an OT does and what a physio does.

IE: what they can supply, like physio's supply braces, and OT's supply household aids, a list of each?

Kay x

[Retro]

Hi Gals,

Thank you for all your input it is invaluable.

There are currently sections under "Living with Hypermobility" about Aids/equipment and OTs. There is also information about aids under "Pain and Hypermobility" > "Relieving HMS Pain".

Keep em coming folks

Lindsey

[Kayzee]

Oh sorry

[Retro]

No worries Kay.

I also forgot to mention that all areas of the main site will be updated including the info we've had from the various specialists.

We also hope to update the members area and put it to better use.

Lindsey

[kimsta]

hi...

have a muggy head so havent read the whole thread, but is it possible to have a link to publications and research articles from journals etc ?

[Retro]

Hi Kim,

There are currently publications areas under "resources" and a links database too.

Links to research...hmmm....need to see about that one, there are just so many papers out there and keeping them up to date would be a massive and timeconsuming job.

This is great, the website is being updated bit by bit.

Lindsey

[loosebones]

how about somewhere to share recipes and cooking ideas? I know it's not a food forum but I have found that a focus on what I cook helps me stabilise my HMS and IBS and other things I have.

[Retro]

Hi Bones,

That would be something to go here on the forum rather than on the main site.

Lindsey

[nonyanomemory]

Hi sick lizard it was actually your pictures which made me realise that its not everyone is as bendy as us lot!! The foot one I can turn round to face backwards. These are things that could possibly go in members section.

A word of warning to peeps - do not try these unecessarily they may cause you pain - professor G said to me years ago that doctors shouldn't keep asking patients to prove they are hypermobile again and again. SO proceed with caution.

On a general note - very well qualified doctors have to be trained to assess hypermobility - in and out of the criteria, so self diagnosis can be problematical. More than one condition presents with hypermobility.

Please remember Retro is asking for comments and tips on the Website not the forum at the present time.

One at a time please in an orderly fashion:)

[Joski]

Hi Nonya, I've actually been meaning to update that picture with a shot of my feet side by side, but facing opposite directions!

You're very welcome to use any of the photo's in the album for the site, as like you and many others have said, it's difficult knowing what is normal and what isn't at times without some kind of comparison - that's part of why I created the album. I totally agree with your warning though and would stress for people NOT to try these positions unnecessarily and please remember that several are of actual injuries, subluxations and even very painful dislocations! Please also bear in mind that some issues are related directly to my particular situation, especially the fusion surgeries and are not necessarily regular or advised aspects of HMS.

I sincerely hope that the pictures will be of help to HMSA members old and new. Please don't hesitate to let me know if you need/want any specific pictures as I am regularly documenting my rollercoaster journey with this condition.

Huge respect and great thanks to Retro for her hard work on the site, the new look is certainly very striking and effective. I look forward to your continued development of the various areas and to helping in any way I can. One suggestion I do have, with apologies if it's already been mentioned or is in process, would be a searchable database of interesting and useful articles about HMS and related conditions and treatments. So that people looking for specific documentation for an appt about HMS/EDS and bone density problems for example could do a search and find relevant articles and weblinks.

All the best and thanks again for all your hard work,

Love and hugs.......Jo x

[Sue New]

Hiya,

Sorry if this is in the wrong place - it more a suggestion about the Private messaging service, but would it be possible that when you reply to someone's message, you can still see what they have written? I have the most terrible short term memory and the amount of times I have pressed the reply button and promptly forgotton what the other person has written is countless. I know there are ways around this, as a lot of members copy and paste what the other person has put, but my silly memory keeps forgetting to do that as well

Sue.

[Retro]

Hi Sue,

I have the same problem and often click on "quote" then delete that after I've written my reply but I will see if I can have it include the post below like it does when you reply to a post

Lindsey

[Sue New]

Thanks Lindsey

[Retro]

Grey Owl,

Sorry, not ignoring you! I'm looking at the best way to make the site "accessible" and will include the colour scheme being difficult for some

Lindsey