I am so sorry to hear about your little girl, it must be horrible for her to understand and deal with. I have a little girl who is nearly 2 and I know if she was afflicted it would be terribly traumatic to have to watch her suffer.
I am from the UK too and have been recently diagnosed with LS aged 33, luckily I had a great doctor (and private health insurance!) and I didn’t suffer very long before being diagnosed properly.
I was prescribed dermovate by a very knowledgeable dermatologist and she said it worked wonders. I will keep it for if I ever get desperate but ...
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