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~School Disscussion~ Come here to find support, advice, or share stories relating to going to school (all levels of education) and your EDS!

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EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 05-29-2009   #11
Timeless
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um, it was more a reputation that followed me and no school would have me sadly.. partly my fault tho but generally l blame it on the system
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Old 06-11-2009   #12
Aimeewaimee
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Thank you all so much for your advice.

I actually got a letter written from the doctor's and now I'm allowed to use my laptop during the exams.



Now I have yet another problem.

My school has organised a trip to Thorpe Park as a reward for getting good reports etc.
They've also said that anyone with poor attendance can't go.
The day they said who couldn't go was today, when I was ill due to my HEDS keeping me up all night.

I've been told I'm not allowed to go because of the amount of time I've had off school. However, some people in my class have a lower attendance than me and have been allowed to go on account of the fact that they have a condition which means they are allowed time off.

I also have a condition and yet for some reason am not allowed to go.
I honestly don't understand this.
My aunt is a lawyer and says this is discrimination, as the school have decided that my condition isn't 'important enough'

I don't know what to do
I really want to go, please help.
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Old 06-12-2009   #13
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sadly there isnt enough known about the condition in fact before helping out here l never knew what eds was (l still dont exactly) its prolly not recognized as much as the ones who have been given the benefit of the doubt.

so the best suggestion l can suggest would be to get advice information pack (of some sort) from your doctor with regards to information on your medical issues which can be taken to your school when you file a complaint of discrimination to your school because lets face it eds isnt the nicest thing to have and can leave you pretty much bedridden on days which isnt your fault so why should you not be allowed to have fun on the few good days you might have which are relitively painless?

l guess my point is here, your school most likely lacks the knowledge of your problem so it would be worthwhile proving to them that you have a valid reason by educating them on the subject.
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Old 06-15-2009   #14
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if you go on this site they do leaflets and stuff that are designed to be given to schools and teachers about EDS http://www.ehlers-danlos.org/

are you still not aloud to go?
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Old 06-27-2009   #15
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i think that this is discrimination, maybe you could ask your doctor to write a letter to the teachers to let them understand your condition...

P.S. school is finished!!! yuppiiiii so glad of my results sorry, just had to.
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Old 07-19-2009   #16
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I totally agree with Katherine, please print some things out and give to all of your teachers, etc. That is DEFINITLY dicrimination and should not be tolerated. However, the school system seems it has gone horribly down hill the past couple years and of course all of us get the short end of the stick for it.

If you would like, I would also be up to writing a letter to any teachers you have problems with now, or in the future to explain its difficult living with EDS and would love to help you any way I can. So let me know what I can do!

Perhaps have your aunt call in there and threaten em' a little bit. ;) Scare the heeby jeebys out of em'!

Haha, hope everything works/worked out well for you!
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Old 07-27-2009   #17
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Apparently, if your illness is stopping you, you can get a scribe for your GCSEs
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Old 07-29-2009   #18
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That's cool. I think....
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Old 11-28-2009   #19
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I Hope This Is Not Too Late.
If you get a letter from your doctors/physio explaining your condition and ask for extra time, they normally let you.
I have been granted with 20% extra time and a break if i need it.
I really hope this has helped x
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Old 06-19-2010   #20
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I think it helps! Thanks for posting all of this information!
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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