resources for kids with EDS

[Guest guest]

BlankHi Everyone,

I am looking for resources or information about EDS that is actually geared

towards kids. In particular those dealing with hypermobile type.

Based on snippets of conversation about the conference this year it sounds like

there will be lots for kids. Is there specific material being used or will some

be developed by the conference?

Please let me know if you know of anything that would help.

C.

[Guest guest]

Hi ,

I have several extra booklets that HMSA put out for kids with HMS/EDS

III. It's called " A Guide to Living With Hypermobility Syndrome For

Children and Teenagers " and is 23 pages covering the topics of

school, college/university, pai management, around the house, travel,

etc.... I'm not sure what sorts of information you are after or

whether this would be suitable for you or not, but I would be more

than happy to send you one.

Also here is a link to another EDS support group that has quite a few

publications, some of which you may be interested in:

***A Guide for Teachers

This 16 page A 5 booklet gives a valuable insight into EDS for

teachers who have pupils with EDS,

***Difficulties in School & College for Young People with EDS

The results of a survey which was conducted by a retired Headmaster

and the members of the Ehlers-Danlos Support Group

***So You Have EDS Too!

An illustrated booklet written specifically for children, who have

Ehlers-Danlos Syndrome, aged 8 - 13 years old.

***Learning To Be Different

This is an A5 28 page booklet for children aged approximately 4 - 8

years old.

http://www.ehlers-danlos.org/Publications/Publications.htm

---------------

I hope that helps... All the best, and let me know if you are

interested in a booklet or not.

Take care

-Rhea

[Guest guest]

Hi Rhea,

These all sound like such wonderful resources. I think that I will look

into ordering all of the resources you have mentioned. My children are 7

and 10 years old. Both are diagnosed with hypermobile EDS.

My older son was interested in doing a speech on HEDS but all of the

materials I have are adult based medical journal articles which are not

appropriate.

I would like to have the material on hand to share with the school and for

the boys to read themselves.

C.

[Guest guest]

Hi ,

I'm so glad that you found the publications I listed helpful! :-)

The HMS/HEDS booklet I have is geared towards a younger audience and

I think your 10yr old would have no problem picking through it. I

think that it's wonderful that he wants to do a speech on HEDS for

his school! How proud you must be! :-)

I also have a few spares of " An Information Booklet: Joint

Hypermobility " as well as a few other articles I've collected on HEDS

that you're also welcome too.

If you'd like, you can email me at swiftygal_2000 @ yahoo . com

(minus the spaces!) with your addy and I can pop it all in the mail

to you.

I often find myself stuck with questions of " what is it again?

What's wrong? " and its nice to have some good information handy to

share with teachers etc... Just last week whilst having my bone scan

done the technologist wanted to know, " what is it? " Just wait till

she recieves my " EDS and Osteoporosis " pamphlet. *grin*

Take care!

-Rhea

[Guest guest]

In a message dated 2/16/04 5:50:15 PM Eastern Standard Time,

teaforme@... writes:

<< Is there specific material being used or will some be developed by the

conference? >>

There is not anything specific being used for the conference, but we are

arranging some awesome things. That is a great idea, though, .....a

kids

geared program about EDS. We did have soemthing like this arranged to be done

by a genetic counselor who has EDS herself, but she has become quite ill and

we don't know if she will be able to do the workshop we had arranged. I will

bring this up at the next conference committee meeting. We have designed an

" EDS " wordsearch and may work on a crossword puzzle too!

Also, I wanted to tell you, I did order a book at one point in time about

EDS, titled, " Learnign to be Different " ......I did not like it at all. I don't

want my children to think they are " different " just because they have EDS. I

want them to acknowledge that they have this, and despite having EDS they are

NOT different. Like said, " they are not their diagnosis " . I actually

threw my copy in the trash. Again, that is just my opinion, and in someone

elses case it may be an appropriate book. But, I do believe that this is our

biggest challenge everyday we live with EDS.....to not be different, to be seen

and treated just like everyone else.

Hugs,

Sue

[Guest guest]

In a message dated 2/16/04 11:23:57 PM Eastern Standard Time,

swiftygal_2000@... writes:

<< I

think that it's wonderful that he wants to do a speech on HEDS for

his school! How proud you must be! :-) >>

Have you checked out the EDNF site? On the kids page there is a link to some

suggestions on how to go about doing this, and describes one childs

experience when she talked to her class about EDS. Hope this helps!

Hugs,

Sue

[Guest guest]

Hi,

This is on the EDNF website, which is www.ednf.org

Please Help Us Improve Parents Experiences with the Diagnosis of

Their Children.

Are you a parent of a child diagnosed with Ehlers-Danlos syndrome

within the last ten years? Are you interested in helping to improve

the diagnostic process for other parents? If so, please follow this

link to find out how you can participate in an EDNF sanctioned survey

that is being performed by a graduate student in the Genetic

Counseling Program at Brandeis University in Waltham,

Massachusetts.read more

Educator's and Parents Guide to EDS

The Ehlers-Danlos National Foundation is pleased to present our

newest publication entitled: An Educator's Guide: Meeting the Needs

of the Ehlers-Danlos Child, A Parent's Guide: Helping Your Child

Succeed At School. This publication has been prepared to help the

educator better understand and provide for the needs of the school-

age EDS child, and to help parents better understand some of the

options that are available to promote their child's academic success.

read more

Hope this helps.

Love Lana