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Everything posted by kobi

  1. kobi


    hi if your taking immune medications you are very sun sensetive and must be covered up , regards jenny
  2. Hi all Kobi has benn diagnosed with diffuse scleroderma. He has thickining around lungs, skin and fingers are arched , all of his body is stiiff and treatment is steroids via drip once a month, immune suppressents daily, physio daily, regular blood tests, is this common form of treatment. l dont know how to deal with being told my 14 yr old has to live with a disease and also kobi when he notices silly little wounds cause big problems with sclero. how can l best deal with these situations as they arise. He loves outdoors, motorbikes, bikes and scooters and of course he does not see it as serious. kobi is the third child case of scleroderma at Melbournes childrens hospital this hospital caters for children all over australia. regards jenny kobis mum.
  3. Hi cold hands are the result of poor circulation, My hands were what first drew the doctors attention to scleroderma. I some time later fell of the trampoline and landed on the concrete this caused a big reaction to my finger l have photos that l had to show specailist but l dont know how to get them on this site keep warm kobi.
  4. Hi all its Kobi again received information regarding my Tests, there are 13 in a week is it a common process to visit all of these, Ct chest, Barium swallow, E.c.g. Echocardiogram, Psychologist, Physiotherapist, Respiratory function and Occupational therapist I already feel like a laboratory Rat. cheers.
  5. kobi


    Hi my name is Kobi l am 14yrs old and just going through the diagnosis of scleroderma, as yet l dont know to what degree and here in australia there appears to be no up to date information on the net and apparently very rare in young boys, could some one advise me as to what l might be in for regards Kobi
  6. Hi my son is just going through testing for scleroderma, and needs to be hospitalised for a week for tests can someone tell me what may be involved and what they use for treatment and outlook. regards worried mother.
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