Other signs can depend on the person and the type of EDS they have, although two people with the same condition might have different side effects.“My little boy has been pulled from pillar to post while I am either in hospital or getting treatment.
Amanda said: “The nursing team said they had not seen anyone in this level of pain for a very long time, bearing in mind this was a surgical ward. The two weeks were spent trialling medications while hoping I didn't have a fatal reaction.“I’m now on 36 oral tablets per day - some being medications used for cancer patients - and four syringes of liquid pain relief.
She now has to go back to London for another urgent scan and then to see her specialist straight after with his team of specialist neurosurgeons and physios as this condition can be fatal with any wrong movement of her neck.Unfortunately, none of these appointments are NHS funded and taking into consideration the travel and accommodation, is all amounting to a large sum."I feel so sorry for my poor family having to witness this and trying their best to hold it together while in my room.
Bless you can't imagine worst nightmare than constant pain praying for you
This is awful