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Which advice would you give to someone who has just been diagnosed with Scleromyxedema?
See some advice from people with experience in Scleromyxedema to people who have just been diagnosed with Scleromyxedema
If you have been diagnose with the disease you need to know that IVIG is the best known treatment but the health services at some stage will try one or more drugs to see if that works because IVIG is expensive. Some have said it costs $3,000-$4000 per session . So depending on which country you live in the treatment will vary. In the US they are heavily biased towards drugs as the insurance companies sometimes wont cover IVIG.
Posted Jan 18, 2019 by Rob 2750
Because it is such a rare condition, it is a lonely disease. I find the Facebook Scleromyxedema group invaluable and would be lost without the friends I have made there.
Posted Jan 26, 2019 by Kay 2500
