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Hi, just joined today.

EbayLadyEbayLady Member Posts: 1 Listener
Hi, so pleased to have found this group. I have lupus, this year alone I've had pneumonia, maningitis, sepsis and other complications from both the disease and the treatment. I have two boys with disabilities. My 18yo has ASD, PDA, erythromelalgia ehlers-danlos and probably POTS. My 13yo has ASD, ADHD, Ehlers and possible bipolar. Sounds a lot,T but they are very  bright academically and run rings around most adults! Also funny, charming and very tall!! I'm after advice on the transition to adult life and can help others especially with advice  accessing social care funding and Pip. Thank you. X

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @EbayLady   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions. We guide, advise and help new members who join the community.

    You have come to the right place for advice, information and most of all friendship.

    Please have a look around our forum.  We are friendly, care and share.

    Please ask if we can help with anything.  Some one will know a member of our team or a member of our community.

    Please take care. I hope you enjoy your time with the community.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Good morning @EbayLady welcome to the community! It sounds like you've had a lot going on. 

    Jump in and get involved,  if you have any questions,  let us know :smile:
    Scope
    Senior online community officer
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Great to have you with us @EbayLady. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • chiariedschiarieds Community Co-Production Group Posts: 8,105 Disability Gamechanger
    Hi @EbayLady - Sorry for the rather late response, but noticed both your boys have Ehlers-Danlos Syndrome, so thought I'd write. Myself, children & 3 grandchildren, all have the hypermobile type of Ehlers-Danlos Syndrome (hEDS). There seem to be quite a few folk here with it.
    I wish I had some advice to offer, but only know about hEDS & PoTS, which often seem to go hand in hand.
    You've certainly have had just rather too much going on health-wise recently so I hope you're feeling a little better now.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @EbayLady and welcome to the Community.  It is nice to meet you and thank you for sharing with us. I'm sorry to hear of your health struggles.  It does seem as though you have had a lot to deal with.  It is great to have you on board and I'm sure you will make a valuable contribution to the Community.  I look forward to seeing you on it and reading more of your posts.  You will find many lovely, friendly people on here.  If there is anything we can help/support you with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
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