my daughter has Ichthyosis Bullosa of Siemens. Now, if you have ever tried to buy travel insurance in the UK with a pre-existing medical condition you may have had the same problem. There seems to be a big database of medical conditions which all the insurers use (I've tried this on several insurers and price comparison sites). If you search for "ichthyosis" you get a choice of two conditions:
- Ichthyosis
- Bullous ichthyosiform erythroderma

It doesn't say Ichthyosis Vulgaris so obviously the first condition covers my daughter, however, why is Bullous Ichthyosis (EHK) listed separately? It's much, much cheaper if you pick the first condition (in fact, there is no premium loading) but I can't help but think this is intended for sufferers of vulgaris - not every one with ichthyosis up to and including the really serious types. My daughter's condition is much less serious than EHK though, in fact probably no worse than vulgaris - and strictly speaking it isn't EHK anyway though it occasionally gets classified in there.

It's no good phoning up because no-one has Ichthyosis Bullosa of Siemens on their database so they would refuse cover if I applied.

In the past I have just declared "Ichthyosis" because I have travelled to countries where I know the full cost of any treatment would be covered by an E11/European Health Insurance card anyway. I'm not sure I would want to do this if I travelled to America, for example, where the bill could be enormous.

So, what do other people do?
Thanks for any help,