International Rescue

George

Genetic and Rare Diseases Information Center (GARD)

Well this blog has passed the quality checks for resources linked to by GARD and is now listed here (under the Organizations tab). This might explain the slightly increased traffic I've seen here recently although Mark Zuckerberg still has nothing to lose sleep over. Still, if there is anyone out there with a probable/presumptive/possible CLIPPERS diagnosis who wants to share a bit of their story (anonymously if you like)  let me know (see the FAQ) and I'll start a summary page.

Prodding and Poking

Another couple of days of prodding and poking booked in for next week at the NHNN. As far as I know this is comfy chair,  "Brain MRI" and "Case Review", and no-doubt a bit of walking in a straight line and tracking various things being waved in front of my eyes. Also no doubt a medication review which could be important as on the current schedule I'll be off cortico-steroids completely in 6 weeks.

Read other articles in this series at Living With CLIPPERS.

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

Slightly Cleaner Than Before

Keeping My Chin Up

Insured At Last  

Well I finally got some travel insurance via All Clear Options but it took a while for their back-office doctors to decide what to do with me. So for the purposes of insurance I now have Primary Cerebral Vasculitis. I spent about a week being investigated for various kinds of vasculitis last year so I guess it makes sense and Wikipedia says it can be confused with Multiple Sclerosis which I was also investigated for. They would only insure me for a single trip and the cost is about 10% of the holiday (well the holiday wasn't that expensive in the first place) which made me do a double-take. A friend who had some more recent completely different (but well known) health problems was quoted about two and a half times the amount I was for a trip which was much further and for longer so I guess it was proportionate. The good thing is I am able to insure my wife as a "Travelling Companion" which sounds a bit Victorian but means she can claim for problems caused by my CLIPPERS too (like cancellation costs etc). Anyway, that's enough about insurance.

Sex and Drugs and Rock'n'Roll (But Mostly Drugs)

Prednisolone is lower than it's been since I started taking it. I'm now well into single figures and moving to 8mg / day tomorrow. Now we find out if the Azathioprine is doing it's job and taking up the slack. If nothing else it's certainly making me paranoid about all the people who's one aim in life seems to be to cough all over me at the moment.

Read other articles in this series at Living With CLIPPERS.


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

Bits and Bobs

A quick update about a few things.

In the absence of an Easter Bunny this will have to do.

Drugs

Down to 10mg Prednisolone and stable at 100mg (twice-daily) Azathioprine.
This is now the lowest dose of Pred I've been on since being ill.

Feeling alright so far.

Interweb

I came across the NIH Office of Rare Diseases Research the other day and the related site the Genetic and Rare Diseases Information Centre. The latter has an entry for CLIPPERS but the resources available are all generic and not CLIPPERS-specific. I submitted this blog as a suggested resource they could use. They've replied to say they will check to see if it meets their "new criteria" for personal blogs and add it to their web-page if appropriate. I guess they want to make sure I'm not selling snake-oil. I also came across RareShare which is "a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders".  I've signed up and submitted CLIPPERS as a new community (as inevitably it wasn't on their database) but it hasn't appeared to date. 

Insurance Quest
Some more delays with getting travel insurance quote. I rang All Clear Options again last week and they were very apologetic about the delays and said they should have an opinion about how to label CLIPPERS (for insurance) this week. That hasn't happened so I will be back on the phone after Easter!

Happy Holidays!

Read other articles in this series at Living With CLIPPERS.

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

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.

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