~School Disscussion~Come here to find support, advice, or share stories relating to going to school (all levels of education) and your EDS!
Welcome To EDS-Kids
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.
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.
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.
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.
__________________
Chiara, 18
EDS III type (or type I, they wonder about it)
Just Smile. ....and Always Stay Positive! Just think that life could be your worst enemy or your best love, it's up to you. And also the worst ailment could have its positive side.
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!
__________________ Brittany Lynn Stay Strong.
I am a site administrator and if you ever need anything please feel free to contact me.
"some of us are just trying to get through the day without falling apart."
A good friend is a connection to life - A tie to the past, a road to the future, the key to sanity in a totally insane world.
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