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necrobiosis lipoidica

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  • 29-05-2011 11:28pm
    #1
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭


    Hi There,

    As the title suggests, Is there anyone else out there that has been diagnosed with necrobiosis lipoidica (diabeticorum)

    If so, how do you manage it?

    I have the condition 18 years now (it is a skin condition mainly on the legs, small blood vessels develop on the surface and the areas become extremely painful following trauma, ulceration and permanent scarring which spreads over time)

    So far I have been unable to control the condition even with the assistance/supervision of several GPs, dermatologists etc. It seems too little is known about the condition in general. My GP is great, has tried many meds etc and finally has recommended talking to others with the condition to see if they have tried anything that might work but that is difficult because the condition is so rare.

    Certain hospitals here in Dublin have even refused a referral by my GP because it is too time consuming and their staff know little about it.
    I have tried numerous meds, steroid creams and consultations (often costing thousands of euro)-all to no avail

    Any help is much appreciated!

    Thanks


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