Ichthyosis Awareness Week UK

From the 10th until the 17th April Ichthyosis Awareness Week took place here in the UK. Ever striving to do my bit to contribute to raising awareness of Ichthyosis, my friend Joanna and I decided to share our story of finding each other and meeting for the first time in 25 years, with two of our local newspapers. You may recall from a previous blog ’Long Lost Friends’ that I wrote about our story? Well we thought it would be a great way to help raise awareness of Ichthyosis.

Some of you may also remember another previous blog entry entitled ’Media Frenzy’? This was my take on coverage in the media of Ichthyosis in particular, and the way in which it can be sensationalised, stereo-typed, misinterpreted and misunderstood etc. Despite having strong views about this issue, on the other hand if, as I said in my previous blog, the story is gone about the right way and is told in an appropriate way with all the facts correct and it genuinely serves it’s purpose to raise awareness then I am all for it being published. The problem I have is mainly with the tabloid papers, who use shock tactics in their headlines to draw readers in.

Joanna and I both agreed to go ahead with our story for the local papers (The Bolton News and Manchester Evening News), in the hope that it would be written about in a more sensitive way. Of course as with any story told to the media there is always that risk of what you say being misquoted, misunderstood and/or exaggerated so much that it ends up not educating people (which I feel is the key to informing people and helping them to understand about our condition), but ends up scaring people away - I don’t know, maybe I’m paranoid but....

On 16th April, our story was published in The Bolton News. Unfortunately the story is not available online, which I was very much so hoping it would be so that I could share it with my online friends. I keep checking The Bolton News website but to no avail. So, if you would like a copy please feel free to email me and I will send you a copy in pdf file if you like (this is the only format we have it in at the moment, but if anyone can help us out to convert the file into a different file we‘d be most grateful). You can email me at: friends-of-ichthyosis@live.co.uk

We were both very pleased with the article, however we felt a better picture could’ve been used as the photographer took loads - and I’m sure Joanna agrees with me there ;-) The only problem I had with the whole article though was the title. I’m sorry if that makes me picky or fussy or a perfectionist or whatever, but the headline of the story was ’Old friends are united by rare skin disease’. For me personally the word ‘disease’ stands for an illness that is ‘contagious’ which is something Ichthyosis is most definitely NOT! Maybe I’m now the one misinterpreting things? I know people interpret things in different ways, but this is something that I’ve always felt uncomfortable about. I suppose somehow by calling my condition a skin disease, it made me feel like I was dirty somehow. Even today I still silently cringe when it’s called a disease. I have looked up the word ‘disease’ in the dictionary and it states “Disease - affliction, ailment, complaint, disorder, illness, infection, malady, sickness” so maybe it’s right to call it a disease, I just prefer to use some of the other terms such as disorder or condition. I also gave the reporter my website address: www.friends-of-ichthyosis.webs.com and the address to this blog but neither were printed in the article. But not to worry, the important thing is that the ISG website got a mention. I was hoping to try and get more people to view my blog, but I honestly don’t know if I have.

Like I’ve said before, and I’ll say it again education is the key and I want to do all I can to contribute to this. If it means a slight ‘misprint’ or whatever its a chance you take when sharing your story with the paper, it’s to be expected actually. So there’s no point really moaning about it afterwards - even though it sounds like I just have sorry folks. We are still waiting for our story to be published in the Manchester Evening News but still no joy. We were told by the reporter that it could be anything up to several weeks before it's published due to priority stories/coverage, so I suppose we’ve got to be ‘patient’ (story of our lives eh Joanna? lol). I’ll post about it in the blog though as soon as we know anything regarding that one ;-)

Along with the Awareness Week, there was the Ichthyosis Skin Relay organised by the Ichthyosis Support Group. During this event members of the ISG and committee travelled to various hospitals and dermatology clinics around the UK putting up posters and leaflets in their departments. I would like to take this opportunity to say a huge thanks and congratulations to all who took part. Your hard work is much appreciated and you know what they say... “Every little helps”

I've also recently been asked if I'd be interested in taking part in a possible tv documentary, I very much doubt I'll be taking part though as I'm not too keen on the idea and for various other reasons.

Thanks for reading