Necessary precautions/lifestyle changes do i/employers need to make with Ehlers Danlos Syndrome and Arthritis?


Question:
I have been told i have got Ehlers danlos Syndrome, (Kyphoscoliosis) a, serious connective tissue disorder, that is likely to leave me crippled, soon ish (Doctors words)
aswell as Arthritis. It affects all my major joints, my entire spine, neck, both hips, knees and pain in toes. I'm a 21yr old F, just graduated. Want to work with kids.

What necessary precautions can and employers need to make, or changes should i make to my life.
Is there anything i can take/do for the pain. (I don't want pain killers, i really feel thats not the way to beat pain.)
Does bracing help, if so what?
What braces do i get for my knees, for my back, etc, etc?

Please only answer if you can help and are serious, i don't want silly answers, this is serious, i am young and i want to live as happy a life as possible, working with and for other people.

Thanks xxx

Answers:
I do not have what you have but I face the same bleak future.
I live everyday in constant pain but like you do not want to take pain medications that prevent me from doing what I like to do.
I am faced with a future in a wheelchair also but I live my life to its fullest because who knows when I will be in a wheelchair and if I live my life focused on the bleakness of the situation then I am not having a quality of life so live life to its fullest and when it happens deal with it but don't let months or years pass you by waiting for the worst.
I keep in my mind that one day I will be in a wheelchair so I chose to seek college and a career in something I can do in a wheelchair and so can you.
I have a brace to support my body however there are good and bad to braces if you wear them the decrease the muscles you already have but if you don't wear them then you lose the extra support.
At this point in my life I wear the brace when I need it but rarely is that the case.
Pain medications I take the minimal amount because I want to live a quality of life(I also have a pain specialist to assist me with my pain you need to get one they understand your pain allot better and are better educated to help with you pain)
I have one life to live so I am going to live it the best I can and so should you
Because some things overlap - turmeric may help lessen the pain. Resveratrol because it helps the body get and use oxygen better may also help I use 800mg daily.
Info on muscles that may be of interest - The Trigger Point Therapy Workbook by Davies.
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