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Ehlers-Danlos Syndrome / Occipital Horn Syndrome / Menkes Disease

  • 02-09-2010 4:41pm
    #1
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭


    Hi Guys. Pretty precise call out here. Im looking to get in contact with anyone suffering from a connective tissue disorder, particularly...
    • Any form of Ehlers-Danlos Syndrome
    • Occipital Horn Syndrome
    • Menkes Disease

    I suffer from OHS, and I have been told I am possibly the only definite case in the country. The reason I ask to talk to those with EDS is because OHS was originally classed as a form of EDS, and meknes is a disease heavily linked to OHS.

    So if you or someone you know suffers from the above, please get in contact.
    I want to know everything, and I will help out a much as possible too, seeing as their are no support groups online for OHS, and few for EDS [although there is an Irish group, there is no website!].
    Tagged:


Comments

  • #2
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    zangalewa wrote: »
    Hi Guys. Pretty precise call out here. Im looking to get in contact with anyone suffering from a connective tissue disorder, particularly...
    • Any form of Ehlers-Danlos Syndrome
    • Occipital Horn Syndrome
    • Menkes Disease

    I suffer from OHS, and I have been told I am possibly the only definite case in the country. The reason I ask to talk to those with EDS is because OHS was originally classed as a form of EDS, and meknes is a disease heavily linked to OHS.

    So if you or someone you know suffers from the above, please get in contact.
    I want to know everything, and I will help out a much as possible too, seeing as their are no support groups online for OHS, and few for EDS [although there is an Irish group, there is no website!].
    The Irish EDS group is like an off-shoot/local group of the UK EDS group from what I picked up from a contact of mine. If you join the UK group, an Irish person contacts you. Don't know much more.


  • #3
    natm
    Registered Users Posts: 2 ✭natm


    There's an Irish EDS support group on Facebook. I'm not sure if I'm allowed to link to it, but if you google EDS Awareness Ireland you should find it. They have around 160 members with EDS and associated conditions like POTS, Gastropareisis etc.

    Hope this helps!


  • #4
    AlbionCat
    Registered Users Posts: 144 ✭✭AlbionCat


    Hi Zangalewa

    I sometimes read a blog by BendyGirl who suffers from EDS. She is also on Facebook as well and has links to other EDS related sites and other bloggers.
    She is also on Facebook as well. Hope it helps

    www.benefitscroungingscum.blogspot.com


  • #5
    jbleakney
    Registered Users Posts: 1 ✭jbleakney


    Hi. I know this thread is old but my son was diagnosed with menkes disease in 2012. He is now 2. We are in northern Ireland. He is the only case here currently. I don't know if there are any cases in the republic. Feel free to contact us on our Facebook page. It is called Jacks menkes page. There is also a closed group for menkes families. I know of at least one case of occipital horn on there as they are closely related syndromes.


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