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I have FVS/FACS fetal valproate/anticonvulsant syndrome

SeanPSeanP Member Posts: 3 Listener
edited November 2018 in Undiagnosed and rare conditions
Hello everyone. For a very long time I have been looking for some help or answer for support with FACS or FVS.I was born with fetal valproate/anticonvulsant syndrome and I dont feel like doctors can be bothered helping.as im getting older i can feel the strain on my joints and body.It seems like theres very little I can do anymore
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Replies

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

    Thank you for joining and sharing.  I am sorry you are going through a difficult time.

    I understand and have been on line looking to see how we can help and advise as you are a new community member.

    Found a organisation on line called The National Organisation of Rare Diseases (NORD). I assume you have been on line and had a look for any support.

    I have found for you is the British Organisation called Organisation for Anticonvulsant Syndrome.

    Based In Oxfordshire have website.  Have a look . Something to consider.

    http//w.w.woacscharity.org

    Hope that helps.

    We are a supportive community. Friendly, care and share 

    Please ask if we can help with anything some one will know.

    Pleasure to help you.

    Please take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • SeanPSeanP Member Posts: 3 Listener
    I had a quick look at this organisation earlier today but im yet to get in contact with them.thanks for getting in touch so fast!
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @SeanP Happy to help you.  Something I have is a genetic condition. Effects hands, feet and other things like my hearing, eyesight.

    Called lobster claw but has a technical name.

    One final point did get in touch with Genetic UK.  Hope that might help.

    Unfortunately I did find out at the time always deal with families . Genetic UK. So give them a try see what they can do for you.

    I am one of the teams of community champions and the support we are doing to try to help those of our community who need this sort of advice and information.

    Had a support worker from a mental health organisation. Who got information from an American organisation I forget the name.

    Have a register of conditions and disabilities that are rare and have an forum like ours.

    Unfortunately being in the daytime to speak to people like me half the forum tucked up in bed. Due to time zones and all that around it. 

    Something to look at. Wish you the best. Please ask if I be of any help or members of our community.

    Always here to listen.

    Pleasure to meet you.

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

    Welcome 🙏 it’s great to meet you today.

    Have you tried:
    “Rare Disease UK”

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



      

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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,747 Disability Gamechanger
    Hi @SeanP welcome to the community! :)
    Disability Gamechanger - 2019
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  • SeanPSeanP Member Posts: 3 Listener
    Thanks,I'll look into that too.im really just looking to see what sort of medical or government support there is.ive seen doctors for over 15years to no avail.no prescription,no diagnosis or anything.that makes it a little difficult to argue a case for not working full time as it gets painful after a couple days labour
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  • emmellecyemmellecy Member Posts: 3 Listener
    Hi @SeanP

    I have FVS/FACS too, I only found this thread today. I hope you get the help and support you need. I have joint problems too and I do exercises to help with my back and shoulders. I hope there will be some changes in the next few months/years for people with our condition. I wish you all the best xx
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