BiographyI almost died having my daughter as I did not know that I had Ehlers-Danlos Syndrome then. I wasn't able to hold my daughter, change her nappy, feed her and generally be a mum for a long time as I was very ill.
When my daughter started school, her teachers kept saying to me that "there is something not quite right but I can't put my finger on it!" I never sought a proper diagnosis as she was dealing with enough stuff health wise and with the bullies and I felt a 'label' would not be helpful! (With an EDS diagnosis usually comes a diagnosis of Dyspraxia, and Autism was the 'buzzword' back then!). Dyspraxia fits now, with what I have read but I have still not sought a confirmed diagnosis).
In 2009 my daughter had a tonsillectomy that went wrong and she was left to bleed which went onto her right lung and caused pneumonia. She then had loads of hospital appointments as she struggled with lung problems.
In 2010, we were sent to a Professor Pope in Stanmore Hospital, who specialised in Hypermobility syndrome, who confirmed that my daughter did have Hypermobility syndrome. He also said that myself and my mum also had it and that he thought that we had a genetic condition called Ehlers-Danlos Syndrome and that we should see a Professor Grahame in London. Prof. Grahame confirmed that myself, my mum and my daughter all had this genetic condition which is a connective tissue disorder.
Due to my ill health and my daughter not getting on at school, we moved out of the area and she is now home schooled. She is on the spectrum somewhere but because we don't need a 'label' for school I have not pursued a diagnosis and I think I am also the same and I think we both have dyspraxia as that comes with having EDS unfortunately. My daughter has struggled with puberty which brought on depression a few years ago. She was also in a lot of pain which the doctor treated the pain and she felt a little better but things are not going well for her.
I have had to continue to try to home educate my daughter through all of this and she has been an absolute star. Unfortunately, because of what has happened to me in the last year (being mostly bed bound) my daughter has had a complete change in her home life from me being her carer to her having to do more because of the role reversal and because her home life is not the same as it used to be. During the last 4 years both our health has got worse and my daughter still has mobility problems and has had to use a wheelchair more and more. EDS is a progressive, multi-systemic illness and things can change day to day. There is just the two of us and I can't remember the last time we had a holiday, let alone any treats and especially not a fantastic handmade quilt! My daughter is now 13 and the two of us are a great team and we have just found a family not far from us that 4 of them in the same family have EDS so my daughter can now say she has a friend and has just had a sleepover! She also tied her shoelaces for the first time on her own yesterday, aged 13, 14 in December!
Anyway, I have missed some off, I'm sure, but I think that is us in a nutshell and Thankyou. X
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