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Hello 😊😊

LisaPB1972LisaPB1972 Member Posts: 1 Listener
I'm 46 years old, wife and mum to 3 (aged 17,15 and 11 years old. When i was expecting our last child my pelvis gave way, very painful, this was the first real signs I had hEDS, I have also got fibromyalgia, parathyroidism, I had a nervous breakdown about 5 years ago which I haven't really got back to how I was before.

Two of our children, oldest and youngest have hEDS, low ferritin levels which they think is genetic, oldest has also got scoliosis, eczema, raynards and eruptice velus hair cysts, our youngest has also got stomach issues, a syrinx in his spinal cord, nerve damage, chronic sever nose bleeds, migranes, eruptive velus hair cysts and huge feet! as I've said just turned 11 years old and he has to have size 10.5 shoes, we are waiting for orthotics to make him shoes to fit. 

We have lots going on but not a very understanding family on my side, despite me being 1 of 8. My husband's family are busy or to too old to help or support us. I feel very alone a lot of the time, husband is supportive but I think he shuts down when I talk about our problems. 

Anyway if you've reached this far and not fallen to sleep or lost the will to finish reading this I congratulate you. I look forward to reading other posts and supporting others. XX😊❤️ 







Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,471 Disability Gamechanger
    Hi @LisaPB1972 welcome to the community! Sorry to hear what has been happening, how are you feeling today?
    Disability Gamechanger - 2019
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Welcome to our community @LisaPB1972, it's great to have you with us. You have so much going on! Please let us know if you have any questions or need advice about anything. In the meantime, feel free to get involved in some of the discussions around here or take a look at our parents and carers group, or our chronic pain group. We're a friendly bunch here and will be happy to offer support or just have a chat if that's what you need.
    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. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @LisaPB1972 Pleased to meet you welcome.

    Thank you for joining and sharing.

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

    You have come to the right place for information and advice, support.

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

    Please ask if we can help and advise with anything.

    Some one will know from our community or a member of our team.

    Please take care.

    @thespiceman

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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