Just had a visit from the eb nurse and they have confirmed I do not have eb but a form of ehk. They explained to me that arthritis asthma and stomach problems which I have are linked to ehk not eb and the photo of when I was born is not typical of an eb baby. The only thing they can think of with my misdiagnosis is that because ichthyosis was not widely recognised in the 80s maybe they didnt look at the biopsy properly and presumed because of blistering it was eb. Now just waiting for the appointment to Mary judge and then hopefully get properly diagnosed and on to the proper treatment.
Posted on: Thu, 24 Oct 2013 12:08:56 +0000
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