Rare Disease

  • Posts: 1
    02/09/2018  00:40

    Hi I’m Michelle, I’m a 32 year old single mother of four. I am the one in a million with budd chiari syndrome and it’s killing me. I was diagnosed 15 months ago but don’t know if I’m coming to terms with it. First I lost my job, then dcf took my children because they think I’m too sick, because of losing my children I lost housing which got my kicked off the transplant list that could have prolonged my life several years more. I lost everything and I’m completely numb. I was attempting suicide repeatedly until they got me on strong meds and now I’m just a zombie trying to live my life to the fullest while having no desire to even have fun, it’s just a distraction. How to I face the loss when I spend so much time pretending all is fine. I’m constantly on the go trying to escape the heartache and guilt and disappointment in myself even though I didn’t cause my health issues. Where do I even begin?

  • Posts: 229
    03/09/2018  09:29

    Hi Michelle, it sounds like you have lots happening in your life at the moment. We are here to provide you with a safe space to discuss how you are feeling and may be able to signpost you to further sources of information and support as well. Can I just check what dcf stands for? Are you in the UK? Looking forward to hearing back from you. 


  • Posts: 1
    07/01/2019  09:12

    I am going through the same! The incurable diseases ended my career of 20+ years and my bright , funny intuitive child struggled with the obvious changes in my health, presentation, abilities and hospital stays. I sought support from Childrens Services by requesting a welfare and support assessment for my child. He never received that nor therapeutic services. My care plan and assessed needs within it include parenting support and 41 hours funded Care. What we received was 3 half hour visits mon to thurs , 2 half hour visits fri and sat , nothing on a Sunday. When I requested provision of support as reflected in my plan (and as received before moving LA area) what we got was removal of my happy , settled child without those provisions being put in place. I now have the provision closer to the identified needs and receive 5 hours a day but I haven’t got my child now as he is in Care. I took the prescribed route to receive help and support yet neither ever received it. My child is broken as am I

  • Posts: 35
    07/01/2019  14:25

    Hi Monty,

     

    We’re sorry to hear about all that you and your child have been through and are continuing to experience. Hopefully you will find this online community a supportive space to talk to others about how you are feeling. We are also here on the Support Line with a listening ear and you can contact us on Freephone 0800 090 2309 or you can talk with us here on the community if you prefer.

     

    Take care,

     

    Clare – Marie Curie Support Line Team

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