Tag Archives: Psoriasis

PSORIASIS BLOG: Manchester Psoriasis Shout Out 2

Manchester Psoriasis Shout Out 2

Despite advice from a media savvy friend that one should do so, I’m not the type of person who reTweets anything that praises me. I just reply and say thank you. I am not sure what is to be achieved by yelling out to cyberspace that someone likes your work. It comes across as either needy or narcissistic and I don’t want to be either of those. You wouldn’t go up to somebody in a pub and say “Look, John from Doncaster thinks I rock and @twinkletoes says I’m hot and funny”.*

(*in the interests of full disclosure, those were made up names and comments – NO-ONE has ever Tweeted that I’m hot and funny).

 

Lots Of Highly Trained And Skilled Professionals From Salford Royal Hospital Dance Like Loons Just To Raise Awareness About Psoriasis.
Lots Of Highly Trained And Skilled Professionals From Salford Royal Hospital Dance Like Loons Just To Raise Awareness About Psoriasis.

So with that in mind, I post the words below NOT because they say once things about me but because the Manchester Psoriasis Shout Out was designed to highlight to people with this condition that they are not alone and that there are resources and methods that help. From the feedback below, it seems we did our job. So if anyone reading this does feel isolated or at the end of their tether with this horrible condition than please have a look. And then maybe drop me – or some of the groups I will link to underneath -a line.

I present it unedited…

 

Here’s how I feel about the psoriasis shout out and how it’s effected me since.

I first heard about the shout out back in April through Helen the Flaky Fashionista and Tony [sic] Hadoke. They both had reached out to me some weeks before via twitter when I was at a very low point with my psoriasis. I had searched the hash tag #psoriasis and came across Helen first. We started to chat about various treatments etc, and then she introduced Toby to the conversation. At that point, knowing there were two separate people outside of my family who knew and also suffered from the disease was somewhat comforting. It truly gave me hope, and actually brightened my day. After a few conversations, they both mentioned about the ‘Shout Out’ campaign being run. I knew I had to be a part of it, even by just attending. I was also asked to take part in Helens fashion show and initially I agreed, but soon bottled it as I was scared of standing there and people staring. Looking back, I truly wished I did take part as I’ve since learnt to embrace my P and no be embarrassed any longer. I came to the event at Salford Royal, just as the flash dance started. I immediately felt myself welling up, I couldn’t believe that all these people were getting up and dancing for psoriasis – it was amazing. I went over to the van and spoke to some amazing people. I was slightly overwhelmed, and had a lump in my throat the majority of the afternoon. At this point my P wasn’t as bad as it had been on my arms so I was able to wear short sleeves, but my whole mental state was a mess. I felt low, ugly, angry and quite hateful. All of which slowly went as the afternoon went on. I was introduced to Helen and Toby, and I was slightly nervous. I was nervous because in the few weeks id had spoken to them on twitter, I’d become slightly in awe of their work for raising awareness and the like. I couldn’t get my head round how accepting they both were (to a point) of the P. We sat down and had a chat, and it was nice to just be truly honest about how you feel etc. We also made a few jokes about P and leaving skin around. Which, if you’ve ever suffered from P, you’ll know you need to maintain some level of humour to keep you sane.

Complimentary massages were on offer, Which I heard were fab. But one of the things I was keen to see was the mindfulness session and the talks about the future for P. I went into the mindfulness session with a very open mind – I know my limits and I know sitting there nice and quiet is beyond me. But I did it, and initially I thought this isn’t for me at all. But the weeks after I would say I utilised some parts every now and again. It was wonderful to hear the talks from everyone, it’s lovely that people actually look at P and think I’m going to do something about this. It’s not the most glamorous disease there is after all.

A real highlight of my day was meeting another sufferer called Russ. He’s amazing. He has both P and PSA, but he was still smiling. He read me his poem, I can’t explain how I felt but he hit the nail right on it’s head. Again, I turned into a girl and started crying. It was at that point I told myself to wind my neck in and just accept what is and move on. When I left, I called my mum right away who is also a P sufferer. And she was gutted she couldn’t get the time off work to come. She said that she could hear a change in my voice and said I sounded more brighter then I had in months.

Unfortunately, I’ve since had a flare up and was admitted to the ward. I was on there for two weeks, and it felt like therapy. The nurses ask you upon admittance what’s most important to you? I looked round and most people had put things like go home or get better. Mine was to wear shorts – I’m a girl, and I’ve pretty good legs apart from the scabs. I felt that the admission was the ending I needed to finally accept my P and embrace it as part of me. With the help of all the wonderful staff and patients I feel I’ve done just that. I’ve been out of hospital two weeks now, and the weather is scorching, perfect time to get my legs out in a pair of shorts. Yes I’m flake free for the first time in over 10 years, and it feels amazing.

I truly believe that the Helen, Toby and the shoutout were my turning point and is love to be able to help others out. So sign me up for next years shout out xxx

My thanks to Rebecca for letting me share her feedback.

Links: Manchester Psoriasis Shout Out

See Psoriasis, Look Deeper

The Psoriasis Association

Helen Hanrahan – The Flaky Fashionista

PSORIASIS BLOG – Manchester Psoriasis Shout Out 1

MANCHESTER PSORIASIS SHOUT OUT

SEE PSORIASIS, LOOK DEEPER CAMPAIGN LAUNCH

There’s been quite a build up to the Manchester Psoriasis Shout Out, which is a refreshingly upbeat campaign to get people talking about this most hidden of conditions. For the first time in my life, despite my long association with the city, I set foot inside Manchester town hall on Monday 28th April. I made sure that my larynx was in good shape for this was to be the day that the shout out began.

Psoriasis Blog 5
We have a new tree for the patient postcards. The old one has gone to the great forest in the sky.

Earlier there had been a couple of flashmob dances but I absented myself from those of the grounds of an old war wound and the fact that there’s a line (one I won’t be crossing, even with a jig). My contribution to the day (purely verbal, thankfully) came during the Manchester launch of the See Psoriasis, Look Deeper campaign. I have blogged about this before, but since then we have acquired a new tree (the old one fell to bits) upon which to hang the postcards, and this time the Mayor Of Manchester was on hand to add a bit of officially sanctioned bling to proceedings.

Here’s a paraphrased summary of the things that were said and by whom:

Professor Chris GriffithsFoundation Professor of Dermatology, Faculty of Medical and Human Sciences, Manchester University – This eminent man provided a lot of stats. One in fifty people suffer from psoriasis. You could gather everyone in Manchester with psoriasis and they would fill Old Trafford. On a full tram four people contained within it will have psoriasis (and will therefore be twice as irritable as you are about possibly the least competent transport system since the infamous wax helicopter and jelly bicycle). It affects people’s confidence, employment options, and relationships.

Professor Chris Griffiths: a big hitter and senior psoriasis expert. He still danced in the video though.

Helen McAteerChief Executive, Psoriasis Association – Thanked everyone from the University Of Manchester who had helped with the Shout Out and contributed to research in psoriasis. Research has really developed in recent years. There remains a lack of dedicated services to manage the psychological impact of psoriasis.We need to raise the profile of psoriasis and the impact that it has. We need to listen to patients as they know the impact more than anyone. We are keen to collect people’s experiences. Healthcare has changed since the start of the campaign. We need help building services like those at The Royal Free.

Paul BristowCommunications Director, Mental Health Foundation – The Mental Health Foundation are a national charity committed to combat mental health issues. They research developing practical solutions to improve mental health services and campaign to reduce stigma and discrimination. We often hear about parity of esteem: it is important that we understand the relationship between mental health and physical health. Psoriasis is a physical health condition but has a major impact on quality of life and thus an inevitable effect on mental health. Plans for the future: continuing to raise awareness, academic research and direct patient support. We wanted to share the evidence from the postcards with doctors, patients and policy makers. Very excited about direct support for patients – helping patients understand their emotions and learn to cope with them better. Booklets documenting this will be released soon.

Dr Sandy McBrideConsultant Dermatologist, Royal Free Hospital – Shared a story about one of her patients who we will call Alan*. Ten years ago Alan checked himself in the mirror once an hour, checked his clothes for detritus, and went to hospital once a week demanding treatment. In terms of socialising he only ever went out to nightclubs because they were dark. His partner was on the verge of leaving him because he was hard to live with (not because of his psoriasis). Last week Alan was happy, he was working, was still with his partner and had an active social life. He still has some psoriasis but he is happy – he underwent 12 sessions with Doctor Mizara and that totally turned his life around. 93% of dermatology units don’t have that level of psychological support under the current system.

Dr Chris BundySenior Lecturer, Behavioural Medicine, University Of Manchester – Is very proud of the campaign. Her research unit are developing a very strong bond with people suffering from psoriasis. In our Western society we overemphasises the importance of physical features. You open any magazine and you see blemish free skin. That is the back drop with which psoriasis patients live their lives. Patients feel judged and people recoil from them thinking that the condition is contagious. These things happen on a daily basis and this affect how patients feel as an individual. Skin conditions rarely escape people’s notice and people make judgements about suffers as a result. People with psoriasis often don’t talk about it and spend time, money and energy hiding their psoriasis. Psoriasis patients talk about shame in a way that those with, say, diabetes do not. There are high levels of anxiety and distress amongst patients. This level of distress is comparable with that found in people with other long term conditions like heart disease and cancer – but people with those get first rate psychological treatment. People with psoriasis have repeatedly not been given access to the treatment they deserve. Those who have had access to these services recover better and quicker and become more productive individuals – back to work quicker and thus contributing to society with labour and tax. Therefore the treatment is cost effective.

MeProfessional Gobshite, No Medical Qualifications Whatsoever – Blah-de-blah, wordplay here, cheap laugh there, self derogatory aside, slight stutter, yaketty-yak. The End.

Links:
See Psoriasis Look Deeper
The Manchester Psoriasis Shout Out

* I am not Alan.

In relation to some queries about my post about psoriasis and mental health, a couple of you asked how the “1 in 10 psoriasis patients consider suicide” stat compared to that for non-psoriasis sufferers. Well, for those lucky folk it is 1 in 26 or 27 – so quite a marked difference I am sure you would agree.

 

(l to r) Dr Sandy McBride, A Man Who Was Once In An Episode Of Holby City, Dr Christine Bundy, The Mayor Of Manchester, Professor Chris Griffiths, Helen McAteer, Paul Bristow.
(l to r) Dr Sandy McBride, A Man Who Was Once In An Episode Of Holby City, Dr Christine Bundy, The Mayor Of Manchester, Professor Chris Griffiths, Helen McAteer, Paul Bristow.

Psoriasis Blog – Updates, Links, Articles and Events

Updates, Links, Articles and Events

 

I have been a bit quiet online of late: apologies, but the outside world needs laughter and no one else in the universe could possibly help (apart from all the other comedians out there, some films, telly programmes and the odd feather).

 

OK then, I’ve been sloppy because frankly time has been flying by. It used to be – when I was a lad (Spangles, Kajagoogoo, affordable housing etc etc) – that Christmas seemed an age away and days at school were yawning chasms until the weekend and fun. Now all of a sudden my infant firstborn is 14 in a month, has hairy armpits and probably swears. What happened there? (That was your life mate, you should have been paying attention).

 

When Worlds Collide... Me With peter Mandleson At The Dermatrust Launch.
When Worlds Collide… Me With Peter Mandleson At The Dermatrust Launch.

So apologies for the brevity but here are some links that are quite useful, I hope. First up – on February 25th I attended this year’s launch of Dermatrust, a vitally important charity which is looking to raise money to help with the treatment of people with skin conditions. At the moment there is a target of £3.4 million to be gathered which will help to fund important research and implement initiatives which could lead to drastic improvements in the lives of dermatology patients. I zipped to London and arrived with minutes to spare in order to be (and I never thought I’d feature this on my CV) Peter Mandleson’s Warm-Up Man!! I hadn’t quite realised that there were many illustrious potential donors there, so sort of bumbled my way through an ill-prepared bit of blather before the man himself gave a much more measured and intelligent talk designed to get them to part with their cash. Did he do a joke about hoovering up dead skin though? I don’t bally well think so!! Eat that House Of Lords! Though not unaware of the faults of our political system I nonetheless think it is quite exciting to rub shoulders with someone present at key decision making and world defining moments in modern history. And to tell more jokes than they did. And he seemed very nice – and having someone heavyweight lending their support to such fund-raising ventures is not to be underestimated. I suspect there wouldn’t have been quite such a turnout had the only non-medical speaker been a man (me) who was once in an episode of Holby City (albeit a man who was once in an episode of Holby City who tells more jokes than everyone else). There is lots to read on the Dermatrust website, and details of the efforts of some non sufferers who have been kind enough to run the marathon in order to raise money (running a marathon is one thing, but can they tell jokes about itchy skin? I think not!).

 

In addition to that, I have contributed to an article which highlights the benefits of treating the mental health ramifications of this pesky condition. It was published in a paper who’s name I do not care to mention (but imagine a curtain twitcher with more certainty than facts and a dubiousness about anything that has occurred since 1955 mixed with a mean spiritedness combined with an unjustified level of moral outrage and you can probably guess the organ to which I refer). Still its health pages are actually pretty detailed but nonetheless I am happier to link to the article here as it doesn’t involve a hit on that particular website. Some may say it’s hypocritical of me to feature in a paper I despise – I disagree. I didn’t profit from the piece in any way, I am simply trying to spread awareness, even if that awareness stretches into a place I wouldn’t want to go myself. There is so much ignorance about (not least in that newspaper) that I am happy to combat it anywhere. Plus Grace, the freelancer who wrote the piece, was very nice and worked hard to do a good job. I was amused that when requested for the photoshoot I was told that the paper had certain rules for their subjects: apparently readers of that paper aren’t to be subjected to people wearing black (it’s a news paper that doesn’t like black – who’d have thunk it?). I also couldn’t be entirely black and white (unlike their reporting). And finally, apparently no-one in that newspaper’s universe wears jeans, so jeans were forbidden on the photoshoot. I wore jeans*. The article (and offending photos – which didn’t make the printed paper itself) is here in case you missed the link earlier in the paragraph because you were still trying to work out which paper I was being oblique about (in which case, you probably read it).

 

Finally, next week there are a load of events in the North between 28th April and 2nd May as past of the Manchester Psoriasis Shout Out. I am taking part in some, you can take part in others. Info, links, videos and a timetable of events can be found here.

cropped-Banner214

* I know, you’re thinking “What a maverick – he don’t play by no rules. He sticks it to da man”. Indeed I do. Especially when I accidentally lock myself out of my flat and have no choice but to go to the shot in what I’d be wearing all day.

 

PSORIASIS AND MENTAL HEALTH

PSORIASIS AND MENTAL HEALTH

February 28th 2014

I have been banging on about Dr Mizara and derma-psychology without much context, so here are a few words about psoriasis and mental health. Opening this world up to me has been a revelation, and after a lengthy spell under her guidance, I think I have made improvements which help to alleviate the stress and black feelings that often accompany this otherwise marvellous and hilarious condition.

All of the following figures have been thoroughly researched and collated and have come my way via the See Psoriasis, Look Deeper* group on which I sit alongside various experts: 

(i) 1.8 million people in this country have psoriasis, and it affects men and women in equal measure. 

(ii) Of those 1.8 million, 20% are on antI-depressants or something similar (in the interests of full disclosure, I will tell you that I am not among that 20%)

(iii) 32% have problems with alcohol (hmm, I may be close personal friends with at least some of that 32% – we might even holiday together occasionally).

(iv) 33% experience depression and anxiety (I belong to all the best clubs). 

(v) 85% feel annoyed by the condition (no surprise there – an itchy, painful, unsightly thing is found to be annoying: what’s next? 85% of people find Jeremy Clarkson to be a boorish git? Shocker!).

(vi) 20% report rejection and stigmatisation as a result of having it (I’m always being rejected and stigmatised but I tend to blame me for that rather than my psoriasis).

(vii) 10% have contemplated suicide (yes).

Psoriasis treatment needs to look at more than the surface manifestation of the condition. No amount of creams will get to its cause – and if you are sent away with a massive prescription but no examination of your emotional welfare then you are being shortchanged. If your GP regards psoriasis as merely a skin ailment then they are wrong. This isn’t to criticise GPs by the way – in training the average GP barely scratches the surface of dermatology, let alone psoriasis: and as we all know, scratching the surface merely irritates it (ho, ho).

Psoriasis Postcard
The See Psoriasis, Look Deeper campaign asked suffers to write a postcard to their condition. The results are very revealing.

The basics of this are obvious. If you have a blemish people notice : they stare, they react, they recoil. This makes the sufferer self-conscious and creates feelings of low self-esteem. Low self-esteem often leads to lifestyle choices (demotivated regarding exercise, recourse to alcohol, eating crap) which mitigate against successfully tackling the skin problem. These choices can also have side-effects which produce other conditions that have been found to be heavily related to psoriasis (like heart disease and diabetes). And it’s not just the lack of kindness from strangers that is problematic: psoriasis can adversely affect everything from family holiday plans to sexual relationships (“Do you wanna come back to my place, but bear in mind that you may have to hoover yourself afterwards,” is never going to be the chat up line of the century). To be frank, it is there all the time.

And this isn’t about people feeling sorry for themselves and needing to buck up: and tackling it would be financially beneficial in the long run. Society would benefit from psoriasis sufferers not taking as much time off work as they do (up to 26 days a year are lost from patients being unable to work – at its worst it hurts like hell) or being unemployable (your options are limited if your appearance is deemed unpleasant or wrongly assumed to be unhygienic). Unemployment is three times more likely for a psoriasis sufferer than for the scab free – a functioning, tax paying patient whose psoriasis is under control is a much more cost effective member of society. Also, getting to the nub of a patient’s mental health issues will save the NHS money in the long term as other, expensive treatments are needed less.

Psoriasis treatment is time consuming and requires a huge investment from the patient: when I was

The postcards allowed people to express themselves in a number of ways.
The postcards allowed people to express themselves in a number of ways.

having light treatment I was having to commit to three days a week in my box of delights. As a self-employed person I was fortunate enough to be able to wangle this but it was still difficult. For someone who isn’t a professional gobshite and has things to do during the day it must be a nightmare.

For more on See Psoriasis, Look Deeper, go here,* but if you are a psoriasis patient you must not feel bad about bringing up any feelings of anxiety or stress that you may have, as they are very likely linked to your condition. Once this is understood and acted upon, coping strategies can be implemented. For years I feared much of my difficulty with seemingly straightforward Life Issues was because I was a useless twat. Actually it turns out that it was because I had psoriasis.

The fact that I am a useless twat has very little to do with it.

 

*Do follow this link – there’s much more information and a lot of pictures.

Psoriasis Blog – Treatment Update 12

Treatment Update 12

General Notes Dec 2013 – Feb 2014

You never write, you never call.

You’re correct, I haven’t been, even though things have being happening for the undoubted Dermatological Disaster About Town that I am. I’ll update about a couple of events I have been to shortly, but if you’re in Manchester towards the end of April there’s going to be quite a lot going on. At the moment it just says “Psoriasis Thing” in my diary – hopefully more enlightening info will make its way out soon.

Anyway – treatment continues. I’m still coming away with a full bag from the chemists (so may I heavily recommend the yearly £104 prescription pre-pay thingy? It’s saved me a fortune). I still have Pro-Topic for that stubborn bit on my face which lurks under the surface and occasionally sprouts up requiring a quick splurge which sends it packing really quickly. Having had awful, livid, stubborn, painful and embarrassing scales on either side of my nose for most of my 20s when I should have been all young and handsome, I really should remind myself now and again of how miraculous a change this simple application has been (and it was only prescribed once I was seen by Dr McBride at the Royal Free – provking a faith in her which I retain to this day).

2014-01-14 21.40.44 HDR
Bandages and hat to stop Sebco messing up the sheets. Who wouldn’t want to go to bed with that? He smells of coal tar too, you say? Sign up the whole of womankind for that heady combination…

My knees are a little red in places but my arms are the worst. They’re nothing like they were though and a consistent regimen of applying Doublebase moisturiser to my face and arms morning and night keeps me flake free even if I am a little pink when you look closely (but if you are, I’ll be certain to ask you why you’re doing it!). I have a tube of SebCo (I’ve done the “it’s the most Olympian of all the psoriasis ointments” joke already, surely?) which requires a bit of discipline – application to my arms and scalp overnight for a week. I had a go at this last month and it really did help – especially with my persistently dusty scalp. But the tube burst and so when I squeezed it came out of both ends – it’s bad enough having tar smelling goo on my body (I have to wear special bandages and headgear to protect the sheets) but I don’t want it all over the carpet. So I have a new tube which I will squeeze more carefully, but that means I need a week at home really. I don’t want it exploding in my bag.

My bloods in december were the best they have ever been – so good in fact, that Dr McBride had to look them up as they hadn’t (as is normally the case) been sent to her due to all the abhorrences and anomalies they usually contain. Liver function (the one affected by booze) was the healthiest since records (i.e. my Royal Free medical notes) began. You’ll be surprised to learn that I celebrated that good news by having a very convivial Christmas and have continued with indulgence and bad habits ever since. So my next ones will probably be awful (I was too close to my appointment with the last lot so won’t get the results till next time). We’ve been here before haven’t we?

If physically I have been found wanting, mentally things are looking a lot better. Dr Mizara has been great a providing perspective and coping mechanisms so we have started to review the progress I have made under her and to stagger our meetings a bit so I am seeing her with less frequency. I will blog separately about psoriasis and mental health as it deserves a bit of proper explanation.

In the meantime, I am still injecting myself with adalimumab, which I make far too big a deal of apparently. I think I am being all big and brave (I’m stabbing myself and I have a big, scary looking industrial bin thing to put my used needle-pens into) but my better half just guffaws. Still I feel big and brave and imagine its the sort of thing Rambo would wince about if he had to do it. I’ve got the double whammy of Nizoral and Coal Tar shampoo which, like everything else, is a good combo if I am disciplined but an itinerant lifestyle and slapdash nature mean that I occasionally get caught out and regret not wearing beige. So I am not, therefore, convinced that the Dovonex Scalp Application is doing me much cop but I am slapping that on, and sometimes the Exorex Coal Tar lotion as well because it’s better to be belt and braces innit (though in my case it’s Belt, Braces, Safety Pins, Piece Of String Tied Round The Waist and Unpleasant Smelling Industrial Trouser Keeper-Uppers That Have To Be Applied Twice Daily And Still Might Not Keep Your Trousers Up Entirely).

I have taken a course of Erithromycin as I was sunning quite throaty and would have been a bit susceptible to streptococcal throat infection from a long flight and a weekend in an LA hotel, and am now back on the preventative Cefalexyn. I am a bit worried about the fact that I have to keep knocking back antibiotics and must as Dr McBride about it next time. It doesn’t seem natural, but of course a strep throat infection is a trigger for a massive outbreak so I want to be avoiding one of those at all costs.

In summary then – General Synopsis: no pain, occasional dry patches, lots of medicine. Forecast: I need to lose a bit of weight, do some exercise, and be more disciplined with my medication.

Cue David Byrne – “Same as it ever was, same as it ever was”.

Living With Psoriasis

 

Living With Psoriasis

Some time ago I was invited to a round table discussion about psoriasis.

It was convened by Forest Laboratories: they produce psoriasis cream Exorex. The chairman was Martin Godfrey: former GP, now journalist. There were other GPs there, and representatives of Forest Laboratories and the PR firm organising the whole thing, but most of the talking was done by patients who for various reasons have some sort of profile in the world of skin (the dermatological A List!). So as well as me,  they’d gathered Kate Shapland, beauty writer for The Telegraph and psoriasis sufferer for 5 years, Helen Hanrahan (aka blogger The Flaky Fashionista, 15 years stricken) and Victoria Fine from Psoriasense, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompanying arthritis too.

We told the assorted medicos of our experiences and were then asked if we would be interested in sharing our hilarious tales of industrial strength moisturiser, crusty elbows and low self-esteem with the wider public. And the results are up and downloadable as an E-book called living With Psoriasis. It is fascinating to read other people’s experiences, and I think empathy and knowing you are not alone really do give comfort when one feels marooned on a desert island (albeit one where the beach is made of dusty dead skin cells rather than sand). Helen takes a typically gusty, no-nonsense approach and looks at the practicalities of dressing well when cascading detritus does its best to distract from the impressiveness of your wardrobe, whilst Simon Jury’s wife talks about what it is like living with someone who has the condition – something we sufferers could do well to remind ourselves about. There are other chapters too, covering various aspects of the condition through first hand experience.

I recommend this – it comes from a good place and has been put together with great care. Maybe pass it on to someone too shy to talk about their condition but who might like to hear from others:

http://www.exorex.co.uk/ebook/