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    CRMO Anyone??
    avatar
    crmonomo posted:
    Hi!

    My daughter was recently diagnosed with CRMO (Chronic Recurrent Multifocal Osteomyelitis). This is a very rare disease that causes bone tumors. I would really like to find other parents to talk to. If you know of anyone with CRMO or a support group. Please let me know.

    Thanks
    Reply
     
    avatar
    Annie_WebMD_Staff responded:
    Hi crmonomo,

    You don't mention how old your child is but we do have parenting support groups based on your child's age. As well we have a Parenting Special Needs Children where you may want to start.

    The Arthritis Support Group board.

    - Annie
     
    avatar
    KLHmom responded:
    Hi, My daughter is 11 and was diagnosed with CRMO in Nov. I have been looking for a support group as well. We live in NJ and know of one other girl with the same diagnosis. We found her through our rheumatologist. I would love to talk with you.
     
    avatar
    Jaydensmommy45 responded:
    Hello! My son is 4 years old and developed CRMO when he was 2 yrs. old. He is currently taking Enbrel and Naproxen for the pain management. There is not really a support group but there is a sapho/ crmo disussion blog. The address is sapho_crmo@yahoogroups.com. Let me know if this works.

    I would love to hear back from you. This disease is so rare and its not very often that I find someone from America that I can speak to. I live in Texas. Thank you and I hope you have a great day! Lauren
     
    avatar
    pjton03 replied to Annie_WebMD_Staff's response:
    How's your child doing now? My 11 year old daughter was diagnosed with CRMO in November 2013. Would love to hear from you. Did you find any help with support groups?
     
    avatar
    pjton03 responded:
    How's your child doing now? My 11 year old daughter was diagnosed with CRMO in November 2013. Would love to hear from you. Did you find any help with support groups?
     
    avatar
    pjton03 replied to KLHmom's response:
    How's your child doing now? My 11 year old daughter was diagnosed with CRMO in November 2013. Would love to hear from you. Did you find any help with support groups?
     
    avatar
    carahayes replied to Jaydensmommy45's response:
    I am a mother of a 5 year old girl. Diagnosed January 2014 with crmo after months of failed diagnosis. This year has been very rough. It's been hard watching my daughter in so much pain. We are currently on enbrel which we started 4 weeks ago and in the last year have only had about 2 months symptom free. It would be nice to have some other parents whose children also live with this terrible rare disease to talk to.


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