lupus

Getting away from the world 

~ Rachel ~ Leave a comment

24 hours, three flights, two sick bags and one emergency oxygen canister later, and we have finally arrived in a little corner of paradise called Krabi.  Time for some much needed rest and recuperation.

Set beneath towering cliffs in the middle of a tropical jungle, our resort is possibly the most idyllic setting in which to escape from the real world.  So far, so perfect.


Being one who struggles to stay awake and overly active at the best of times, the multiple flights, change in time zones and a big old helping of jet lag isn’t much helping the cause.

Day one: crawl out from under the mosquito net for breakfast; scuttle back to bed for a quick nap; wake up at 6pm; swim, eat dinner and then go back to bed.  All-in-all a thoroughly exhausting and non-productive day.

Plan of attack going forward: stay awake long enough to actually leave the bungalow and experience Thailand.

Day two: wake up from a deep, coma-like sleep; leave Arctic temperature of an air conditioned room and get hit in the face with a wall of 96-degree heat; stagger to the restaurant for breakfast and eat my own body weight in eggs and papaya.  I figure one will counteract the other…

Next for the tricky bit: protecting my sun-sensitive, lupusy skin in an environment that’s not dissimilar to a tandoori oven. First up, a very liberal helping of Factor 50 P20, followed by Factor 50 on the face and a bit more Factor 50 for good measure.  Plus, of course, the obligatory hat and big glasses.

So here I now lay, oiled up like a seagull in a shipping disaster, sweating like a beast and hiding under the shade of umbrella by the pool.

So far, so sun safe.

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Could Dory find a new immunotherapy treatment?

~ Rachel ~ 1 Comment

Could this be a milestone moment for the treatment of Lupus?

NemoResearch shows that sea anemones that grow on the ocean floor (and provide a home to Nemo, Dory and Marlin) are showing promise as a source of treatment for Lupus. Dr. Anne Stevens, who treats and studies lupus at Seattle Children’s Hospital and Seattle Children’s Research Institute, is presenting results this week from her research on dalazatide, a compound derived from sea anemone venom that she is researching to determine if it could be used as a potential immunotherapy for Lupus. Read full article here.

Finding-Dory poster

And just one more thing…

~ Rachel ~ Leave a comment

I promise this is not a doctor bashing blog (I know the majority do great things every day), but I’m feeling ever so slightly grumpy after recent events.

So here’s the thing.  As a patient, I just wish that sometimes doctors would be a little more… what’s the word I’m looking for… empathetic.

I can count on one hand the number of doctors I’ve seen who seem to care.   Genuinely care I mean, not just asking what they can do to help.  Surely ‘caring’ should be a prerequisite for getting accepted to med school, and attending an Empathy class should be compulsory.  There’s bound to be a half an hour slot right between Dissection 101 and the What’s the Longest You Can Keep Your Patient Waiting seminar.  It seems to me that a number of other important classes have already been cut from the training curriculum; The Importance of A Good Bed Side Manner and Explain, Don’t Patronise are two that immediately spring to mind.

Hey, if ’empathy’ is too big an ask, I’d be happy to scale back all my expectations and just settle with some good old-fashioned listening.  This very basic skill only requires the ownership of two working ears, so no additional NHS funding will be necessary.

Yes, yes, I do of course understand that they’re a very busy bunch up at my local rheumatology department, and that it’s no doubt overrun with 1000’s of other people in exactly the same boat as me – all gnashing their teeth in exasperation and wanting a little more support.  I am also well aware that there’s bugger all that can be done to cure Lupus, and most of the treatments are always going to be hit and miss.  It’s all about the ‘management’.

But here’s the thing: (I might as well speak on behalf of all the 1000’s of fed up, teeth gnashers out there) we would like to point out that we’re more than just an NHS hospital number.  We’re also more than a set of blood results or a bi-annual appointment that needs to be checked off the consultants to-do list.  Some of us are getting mighty fed up with being fobbed off, patronised, pacified and then packed off till the next time, with absolutely no sign of any improvements or progress whatsoever.

Ok, grumpy rant over for the day.  I’ll now hobble off my soap box and go take my meds like the good little patient that I am.

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