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Hi, my name is Sharon453!

Sharon453Sharon453 Member Posts: 5 Listener
Hello everybody, I have a rare disease call Neuro Behcet’s and I have Autonomic Dysfunction.  This affects my mobility and stops my organs working well.  Behcet’s is a type of Vasculitis.  My friend Jess, introduced me to the community today, so we’ve both joined together xx  

Replies

  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Hi @Sharon453 - Welcome to the community; it's great your friend Jess has also joined us all here. Must admit whilst I knew about Behcet's disease, I didn't know there was a neurological form of this, & I've been looking online to read more about it.
    I have dysautonomia too due to Chiari 1 Malformation, which affects a few of those with my heritable connective tissue disorder (Ehlers-Danlos Syndrome).
    Thank you both for joining, & I hope you enjoy looking around. You could try the 'All groups' link to see other sections here & join in any discussions you wish. Altho' you're both rarities, you will find there are 'some' similarities with others here with other disorders. Anyway, it's always good to chat, & you'll find this a very supportive & friendly place to be!

  • Sharon453Sharon453 Member Posts: 5 Listener
    Hi, thank you for the welcome.  It was Jess who told me about the group so it’s nice to join knowing someone.  We are both chatty so I’m sure we will fit in well.

    At the moment my son is moving house, and I’m on dog duty, so this is just a short note to say I look forward to chatting and getting to know people.  

    If if anyone has any questions about Behcet’s please feel free to ask. 

    Thank you you again and hopefully we can speak soon xx 


  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Sharon453

    Good Evening & Welcome ☃️☃️

    I am one off the “Community Champion’s” here at Scope 

    Yes I have also got a “Rare Brain Condition” 

    “Brain AVM”

    This has given me major problems with my Mobility & Much Much More.

    Please please let me know if there’s anything that I can help you with ???

    @steve51
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited December 2019
    Hello @Sharon453   Pleased to meet you.

    Thank you for joining and sharing.

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

    Please I have the organisation for your condition.

    Often useful and informative.

    https://www.behcets.org.uk.

    Please have a look around our website.

    We are a compassionate, have empathy community. Please ask any thing you wish to know.

    Happy to be supportive.

    Please also plenty of members to chat to. I use this forum daily, made a lot of friends.

    Please I hope you enjoy your time with the community.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Sharon453Sharon453 Member Posts: 5 Listener
    Hi, thank you guys for the welcome. I look forward to getting to know you all better and joining in with the community.  

    I had heard of Scope before but wasn’t aware of the online community and help that was available.  

    Take care 

    Sharon x 🎄🎅🏽


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