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Saddened by what I see

craftyarts Member Posts: 19 Connected
Good day everyone...I was born with hyper mobile joint syndrome and at age of 6 I had a heart operation as a result of HMJS which was not recognized....most did not survive as I am now 63! I can assure you hospitals and their tests were barbaric and parents were taboo.
However I survived and still ignorant of my condition I vowed I would pay back for my life ! I was not aware of what I had until 6 years ago! Despite having everything off the list which is unheard of ! 
I trained as a special schools teacher but when I qualified there was a glut of teachers so worked in a psychiatric hospital as a OT helper and loved it , but the call to teach was stronger ! I then got a temporary teachers post for a term and with its extensions I completed my probationary year , but NUT rulings said I could not be interviewed for the job I did as i was not on a permanent contract ! 
I then worked in a school for forgive me when i say this maladjusted children who had done some horrible crimes ! 
From there i went into day care for adults with physical disabilities and became a social worker 
However the HMJS took off and i was pensioned off and now termed severely disabled physically,  but my mind is still ok ! I look around at resources and I am horrified and saddened by the lack of professional support knowledge and resources! 
The stories I could tell you would make your hair curl as I am sure you could tell the same ! 
There is no daycare to alleviate isolation and to improve physical functioning at the same time,  there is very little professional advocacy. Care in the community was devised a longtime ago and by people who had seen the commeradery in the war , which sadly is not there anymore ! So things need to be rewritten. 
This virus crisis has highlighted that many have fallen through the net and are in total isolation at home , nothing new for many , the difference being now is there is no food!
The trouble is we are not just a forgotten few there is a lot of us ! 
I would love to be able to lecture about values and attitudes and put my input into future services ....
Well apologies for the rant I have seen services from both sides! I was always progressive in my  outlook , but I am so saddened what I see  now ! 



  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    A warm welcome to the community @craftyarts. Thank you for taking the time to share this with us.

    How are you doing today?

  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    edited April 2020
    Hi @craftyarts - Welcome to the community & thank you for joining. Well I can relate in part with your story as I have hypermobile joints too, & in fact thought I had Hypermobility Syndrome. Then I met the founder of the Ehlers-Danlos Support group who was equally certain that I had the hypermobile type of Ehlers-Danlos Syndrome. I had to wait 2 & a half years to see the then top geneticist who specialised in connective tissue disorders, who confirmed this in myself & son.
    I had previously researched to find out more about my family's genetic disorder, but didn't get this 'officially' diagnosed by this geneticist until I was 47.
    Well you've joined a great community, & we do our best to support each other, now more than ever. I hope you enjoy being here with us all. Please have a look around & join in with any discussions. Do also say if we can help or support you in any way, & chat here any time. :)
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @craftyarts and welcome to the Community.  It is nice to meet you and thank you for sharing such an interesting introduction with us.  You certainly have had a busy life and I'm sure you will make a very valuable contribution to our Community.  Thank you for joining anyway and I hope you enjoy your time with us.  You will find us to be a friendly bunch of people!  I look forward to reading more of your posts and if we can be of any help at all to you then please just give us a shout.  All the best.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)


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