Support For The Younger Age Group.

[Maggy]

Hi everyone,

I remember when i first started reading posts over a year ago that somebody mentioned there was a website for young adults/children with POTS / Dysautonomia, i have tried researching old posts on this forum and surfing the net itself but not come up with anything.

My daughter is 16 and has been diagnosed with pots lt has been established that its genetic, she is struggling to deal with accepting her condition and accept that she has the same condition as myself even if it is to a lesser degree.

I think it may help if she is able to communicate with people her own age .

If anyone is aware of any groups/ forums or support of any kind i would appreciate any input so that i can check them out .

Thanks for your help.

Maggy

[Sophia3]

Are you thinking about DYNA Kids?

Here is a link

http://www.dynakids.org/sponsors.jsp

[Maggy]

Thank you,

I cant say for certain that this is the one ( memory not too good!!!) but it certainly looks promising.

I will try and register and check it out.

Thanks again .

Maggy

[Rachel]

Maggy,

You are probably thinking of DYNA Kids. If your daughter is on Facebook, there is also a group called DYNA frogs she could check out. Of course, she is more than welcome to come here too. We'd love to have her! There are a few highschoolers here too. If she prefers a place with only kids, though, I certainly understand.

I hope your daughter can find some good friends and support through all of this.

Rachel

[Maggy]

Thanks for the suggetion it was worth a try.

I have just tried to register and have found that you have to be in America to be a member.

If anyone has any further suggetions i would be grateful.

I live in the united kingdom.

I have noticed that we British are becoming more common on this website and i was wondering if any british people were aware of any support groups based in the U.K?

If not is there any way in which one can be started?

This forum here has been wonderful for the support that we need to continue our daily struggle but it would also be nice to meet face to face with people who also have the same condition.

Thanks again

Maggy

[Maggy]

Sorry Rachel must of posted at the same time. did not mean to be rude by ignoring you, What is Facebook?

I think i may suggest that my daughter introduce herself here like you have suggested at least i know that she will get the excellent and caring support from all the people here on this forum.

Thanks

Maggy

[flop]

Hi Maggy,

have you signed up for the meet others programme on the main DINET website? You will periodically get e-mailed a list of other UK members and our locations. Sign up and get e-mailing (or feel free to PM me - I'm in the UK too).

I'm not aware of a specific UK POTS group but have you come across STARS? (Syncope Trust And Reflex anoxic Seizures). STARS is UK based and covers many causes of syncope including Vaso-vagal syncope, it has recently launched chat pages including a specific kids chat page - early days but it may be worth checking out.

http://www.stars.org.uk/

If you can get to Birmingham next week there is an "Arrhythmia Alliance" "Heart Rhythm UK" conference at the Hilton Hotel. On Wed 31st there is a patient day with conference things for patients to attend. There is a charge of ?40 plus ?10 late registration fee if you register by 24th (today), otherwise you can pay ?65 on the door. I'm planning on going myself if I can get the day off work.

Flop

[Sunfish]

hi maggy -

of course your daughter is MORE than welcome here but i did want to let you know that i'm 99% sure that DYNA isn't limited to those in the US. while the name does imply such (dysautonomia youth network of america) i used to be involved with them and there were members from other countries. there is also an organization in the related to syncope/ dysautonomia that may be a helpful resource for you to have; it's not geared toward youth but if there are any such groups in the UK (for youth) they would likely know about it. the link is: http://www.stars.org.uk/.

hope this helps,

melissa

[flop]

Facebook is an online socializing network. Basically you create your own page with your details, photos, friends etc (be wary of giving too much info). You can then link your page to groups of other users - perhaps your daughters school friends, a social group or the DYNA frogs.

I thought that DYNA was for members all over the world, I'm sure there was something in a moto about being for the whole world - I'll have to have a look.

Flop

[flop]

Melissa - we're cross posting again!!

Lol, Flop

[Sunfish]

lol....flop & i were evidently posting simultaneously too! sorry for the repetition

[flop]

Maggy - the main DYNA page says "Based in the US but open to the WORLD!"

Flop

[Lukkychrm42]

Yup, we in DYNA have members all over the place!!! It's really the only kid-oriented organization for dysautonomia.

Where in the UK are you?

I'm in Manchester.

[the_dancer_grl]

yeah, I'm with DYNA too and have been for a couple of years now...I love it and there are lots of kids, teens and young adults to consult with about school issues, peer pressures and etc.