Sunday, 29 March 2015

San Francisco - The Skin Stuff!

I’m back!  Six days spent in a whirlwind of lectures, jetlag, a WebEx, an interview, more lectures, continued jetlag, a Twitter chat, early mornings and a whole lot of learning!  So much so, that I’ve decided to divide my trip into two blog posts.  Today is the learnings.  Later this week will be the fun stuff!

First up, let me give you some context.  I travelled to San Francisco to attend the AAD (American Academy of Dermatology) Annual Meeting, with the Novartis Skin To Live In team and a truly amazing young lady, their Skin Impressions ambassador, Melissa.  You know how we often hear that psoriasis can negatively impact the patient’s self-esteem?  Well, psoriasis schmoriasis!  If you really want to give your self-esteem a good wallop, try posing for a picture beside a stunning 23 year old professional ballerina.  

Just look at her posture!

And just in case you have any slight scrap of self-confidence left, why not tear it to complete shreds by posing beside CariDee English, a former America’s Top Model winner?  Who also happens to be a psoriasis sufferer.  And about six feet tall.  Wearing heels. (As was I – feel free to laugh!)

Moving swiftly along ….

There is Good News!  Yes, it even deserves capitals!  At every lecture, we heard repeated stories of new research being done and new drugs coming onto the market, some as soon as this year.  But what is remarkable about some of these new drugs is that in clinical trials, they have attained 100% clearance of psoriasis in some patients.  No more talk of 75% clear skin, or whooping with joy at possibly reaching 90% clear skin.  This time people, we’re talking 100% clearance.  It appears that this is now a realistic and achievable goal.  Good to know as it genuinely never occurred to me to aim for anything less than 100% clear skin!   I mean that’s a bit like saying ‘Oooh, I really hope I’ll come third in this race’.  What on earth is the point of that?  So yes!  There is every reason to be hopeful, and although I’m not a scientist or a medic, I did understand that the key word in all this is ‘IL 17’.  Don’t ask me the technical stuff … just know that this is what you need to ask your dermatologist about!   Go forth and investigate.

But now the more sobering news.  I always aim to keep things upbeat and positive on this blog, because quite honestly, there is enough negativity around the subject of psoriasis.  But this subject is so serious that I’m not even going to attempt flippancy.  I’m talking about comorbidities.  I went to San Francisco and I knew the basics.  I knew that having psoriasis meant having an increased risk of cardiac disease, stroke, Crohns disease and arthritis.   But true to form, I buried my head in the sand convincing myself that such things could never happen to me.  I live in a rose-tinted world where I honestly believe that psoriasis is ‘my thing’ – it would be too cruel to have something else thrown at me as well.  (My world is a happy, albeit deluded, space!)

I sat in on lectures where the speakers did not expect to have patients in the audience.  So they were blunt with their findings.  There was no sugar coating of details for the patient’s benefit.   And the stark reality is that as we know, psoriasis is not just a skin disease … it’s an autoimmune disorder.  What we may not know however, is that very severe psoriasis can cause extreme cardiac inflammation.  And this – are you sitting down? – can increase mortality risk by 50%.  I saw the slides.  They were terrifying.   This highlights how important it is that people suffering with moderate to severe psoriasis see their dermatologist regularly … and yet studies show that 45% of patients have not visited their dermatologist in the past year. 

Being overweight was cited again and again as a risk factor.  It exacerbates psoriasis and in turn increases the risk of cardiac disease.  These were grim lectures, given by both dermatologists and cardiologists.  I gave up smoking 12 months ago (with thanks to a persistent dermatologist who shamed me into it!) but if I hadn’t, I honestly think these lectures would have scared me into quitting.   

So the learnings are that we need to take care of ourselves.  Not just of our skin, but of our whole bodies.  The hypothesis is that when skin disease improves, vascular inflammation will decrease.  Data is still being gathered for this.  But even as we're waiting for our skin to clear, there is still plenty that we can all do to help ourselves.  And it’s not rocket science!  We’ve heard it all before. 

-        Reaching your goal weight is imperative

-        Cut down on sugar

-        Increase ‘healthy fats’ in the diet e.g. almonds, avocado, etc.

-        Exercise; even if you can only manage a moderate amount.  Some is better than none. 

-        Quit smoking

This has nothing to do with vanity and everything to do with living a healthy and longer life.  For me, it was a serious wake-up call.  I have been faffing about with the gym and half-heartedly watching my diet for the past few months.  Well, no more!  I am now on a mission to get back to goal weight, to follow the guidelines set out and basically to do everything that I can to help myself.   So come join me and let’s see what we can achieve.  And for goodness sake, if you haven’t seen your dermatologist in over a year, make it a priority to do so right now.  Remember!  This is not just a pretty catchphrase.  Psoriasis really is more than skin deep!

End of lecture. 

See you in a few days with fashion 'n fun!


Monday, 16 March 2015

New Boots for A Forthcoming Trip

As everyone else is starting to look at sandals, I perversely decided to look at boots.  Ankle boots to be more precise.  The reason will become clear shortly, but firstly let me show you what I found.  This is a great time of year to find a bargain as most of the stores will be busy trying to make room for their summer stock.

These Savida suede boots in Dunnes Stores actually made me stop in my tracks – such a great copy of the Ash Jalouse.  I even bought a pair in black, knowing that they would probably sell out very quickly if I didn’t make a move.  See!  I’m learning!

Also available instore in a sand colourl  Appears to be sold out in this shade online

But then I tried them on at home and I wasn’t fully convinced that they fit properly and of course I became distracted by the 20% off sale in Marks & Spencer, and so I ordered these Suede Elasticated Panel ankle boots as well.

I wavered for a while over which colour to choose but in the end the navy won, as right now it works best with my wardrobe.  Plus as we all know, navy boots are usually impossible to find.  Black boots were promptly returned.

However, there is currently a sale in M&S on lots of their boots, so this is a selection that would work really well coming into the summer months.  They all provide full foot coverage, the ever important comfort factor for those with psoriasis or psoriatic arthritis, and most of these colours would be perfect with pale or white jeans.

Another navy option and leather as well.  The Leather SquareToe Chelsea Boots are perfect for now, and will definitely be a wardrobe staple in the autumn.  You can’t ask for much more at just €55.

For those of you who love the Toga Pullas (look at me being inclusive – be impressed!) these Limited Edition Textured Ankle Boots are quite a nice homage, although at this price clearly not leather.  Would certainly be an interesting alternative to the usual brogue or loafer style this summer.

And finally these Indigo Collection Suede Stain Away Strap Ankle Boots are calling my name!  Again, the colour is ideal for this time of year as we start to pull the paler colours out from the dusty recesses of our wardrobes

However, I am going to resist, because I’m really hoping to strike it lucky in DSW at the end of the week. Because – drum roll please – I am so, so, so excited to tell you that I’ve been invited to attend the American Academy of Dermatology Annual Meeting in San Francisco this week. I will be attending with the Skin To Live In team, part of the Novartis dermatology arm.   During my time at the conference, I will be attending lectures, taking part in a Twitter Chat, doing interviews, giving a talk on what clear skin means to me … and generally trying to represent the psoriasis patient as well as I can while I am there.  To see some of the great work that the Skin To Live In team do, please click here.

So, the new boot purchase was essential as I think I would look slightly ridiculous wearing my knee high boots in San Francisco.  I have been tracking the weather there for the past few weeks, and at this stage I’m so bewildered by the fluctuations in temperature that I fear my packing may be very much of the ‘just in case’ style – cue large trunk and multiple cases!

My blogging may be sporadic while I’m away, but I will definitely keep both Twitter (@flakyfashnista) and Instagram (@theflakyfashionista) updated, so please come follow me there if you don’t already do so.    I promise lots of photos, chat and observations.   OK!  ‘Tis time to start packing …


Friday, 13 March 2015

Psoriasis Survey

Are you a psoriasis patient living in Ireland?
A new report is being published later this year examining the impact of psoriasis on patients in Ireland.  It is rare to find information that deals exclusively with the Irish patient, and so I’m excited to bring you this survey which will form part of the report.
Please, please spend the two minutes it will take to click on the link below and fill out this questionnaire.  We can all do our part to bring us closer to more effective treatments (dare I say a cure?!) if we continue to provide the information needed by researchers.
If you don't have psoriasis but know someone in Ireland who does,  I would be very grateful if you could share this survey with them.

Thank you

Wednesday, 11 March 2015

Wednesday Wish

I’ve said before that I’m not really a fan of the traditional trench coat.  You know that type that crops up on every list of ’10 Items That Are Essential For A Capsule Wardrobe’?  To be honest, I just don’t get the appeal of a supposed raincoat that doesn’t incorporate a hood of some sort.  Clearly designed by people who don’t suffer from that well-known Frizzy If Wet Hair Syndrome.

This Maison Margiela oversized canvas version of the traditional mac however, I can definitely cope with - even though it too lacks a hood.  Perhaps it’s the absence of a belt (I have an illogical aversion to belted coats) or perhaps it’s the Audrey Hepburn inspired mandarin collar, but either way, I think this would be a very long wearing and stylish addition to your wardrobe.  And do I even need to mention at this stage how perfect the colour is?!