Sunday 25 March 2012

Unclean, Unclean!

One unexpected consequence of having a chronic but little known condition is difficulty getting travel insurance. I am covered by a European travel policy with Nationwide (a large UK bank). So I rang up to make sure I would still be covered when I next go on holiday. "We've never heard of CLIPPERS" they said, but with a bit of prompting, found it on the internet and then had to pass it to the head office underwriting team to decide how it should be categorised for the purposes of insurance. I got called back a couple of days later to be told that Nationwide "had declined to offer cover in relation to CLIPPERS" but that other aspects of my policy unrelated to CLIPPERS remain in place. 

As Much Use As A Chocolate Fireguard
If not ideal, this didn't sound too bad at first but fairly quickly unravelled when I thought about it. Suppose, because I was so relaxed on holiday, I fell down the stairs and broke my leg? They might argue that as balance and coordination problems are signs of CLIPPERS this might be a CLIPPERS related injury. Also if we had to cancel a holiday because of a CLIPPERS related problem (or one which wasn't CLIPPERS-related but might superficially appear CLIPPERS-related) I would not be covered for cancellation costs (and neither would my wife). To be fair though I would still be covered for delays, stolen luggage etc but this on its own isn't enough.

Risky Business
So at the moment I am waiting for a quote from a specialist insurer, All Clear Options, who "provide medical travel insurance for people with pre-existing medical conditions who find difficulty in getting travel insurance elsewhere" - presumably at a price. I still don't know for sure if they will cover me as, surprise surprise, CLIPPERS wasn't on their database either. I think the problem is one of risk - insurers love to be able to estimate risk but it's hard with CLIPPERS as there is so little data out there. So even if I am essentially well my risk may prove hard to quantify.

I'll be sure to keep you posted about my exciting adventures in insurance-land.

Read other articles in this series at Living With CLIPPERS.

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Thursday 8 March 2012

A Minor Milestone

Apologies to my long-suffering wife - this was actually for a far more important anniversary!

Honourable Discharge?
Today marks 6 months since I was discharged from hospital - hurrah! It seems a long time ago now but shows how things can change quite quickly - up or down. I also just got the follow-up letter from my consultant after last months clinic appointment. No real surprises. Apparently my Lymphocytes are below normal which is (presumably) the expected consequence of the Azathioprine and probably the reason I've been coughing for two weeks - Lymphocytes help fight viral infections. The only other thing of note was that I have a "mild left beating nystagmus" which basically means that I have abnormal eye-movement when looking left. This has been mentioned before and may represent residual damage (to brain - it's not an eye problem). It's not something I notice so I'm not losing any sleep there.

Step On Down
Today also marks another change as I've started stepping down the Prednisolone corticosteroid. The suggested schedule is by 1mg/day/week so I've just gone from 15mg/day to 14mg/day. Some reports have suggested that around 12mg/day may be a crucial dose for some CLIPPERS patients. Last year I briefly went down to 10mg/day and thought I could feel myself slowing down a bit.  At the time, I wasn't on Azathioprine so the theory is that now the Azathioprine provides sufficient immunosuppressant effect to allow reduction and eventual elimination of Prednisolone. We shall see.

Read other articles in this series at Living With CLIPPERS.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.