The charity event i went to in Coventry yesterday was for a charity called The Ichthyosis Support Group. This is a charity for those affected by the condition Ichthyosis (pronunced ICK-THEE-YOSIS), which is a very rare genetic skin disorder. I myself have the condition, and have been involved with the charity for the last 7 years, and am Head and northern Area representative for them. The condition is very different from other more commonly known skin conditions such as eczema and psoriasis (which Ichthyosis is often compared to). Ichthyosis basically means red scaly skin. Sounds a bit daunting, but if you go onto the following site you can find out more:

www.ichthyosis.org.uk We are currently in the process of updating our website, so there isn't that much on there yet :rolleyes:

When I was growing up myself and my family had very little support other than that of each other and close friends, so when I found out about the Ichthyosis Support Group in 1998 I really cannot begin to tell you, the relief that myself and my family felt knowing that we weren't alone in being affected by this condition. So it is now my mission to help other sufferers and their families, by giving them the support and help which is so invaluable but help and support we didn't have. I also hope to raise as much awareness of the condition, it is such a rare condition that very few people have even heard of it. There are many different types of the condition which vary in severity, and I have the type known as Bullous ichthyosis, which basically means that as well as having the usual red, scaly skin, I also get blisters frequently. This is why I got so uncomfortable today at the charity footie match where I saw Paddy. Ichthyosis and heat don't go particualrly well together so, I really felt it today. Felt it yesterday too in Coventry phew, what a scortcher lol.

The event in Coventry is something the charity holds once every two years. Its an opportunity for members to meet, share their experiences of living with the condition, gain invaluable knowledge about the condition from our medical advisory team (all skin specialists - dermatologists). It really is a wonderful event, lovely to see everyone together. I personally always find it quite an emotional experience, especially when I see the kids, as I know exactly the pain the are currently going through, having gone through it myself. The condition is at its worst during childhood, and for me personally my condition has improved a great deal as I've got older. It will never go altogether, but then again I've never known any different so I just get on with it. Life's too short I say ;)

When I saw Paddy today, like I mentioned we had a bit of a chat, and I'd already told him about Ichthyosis etc a while ago, and today he offered to donate some signed stuff for me to auction or whatever, or for a fundraising event for the charity!!!!! I was over the moon I can tell ya :D :D Thanks so much Paddy, the charity will be absolutely made up when I tell them :D :D We really appreciate it!! ;) Anyway, here are some pics from yesterday I'll have some more soon, but these are all I have downloaded for now. I was asked to help with the children in the creche!!!! Just being asked meant a lot to me, I was quite honoured in a way :)


Me and one of the children Daniel (who has the same Ichthyosis as me, he's a little star)


Me and Daniel again lol (Daniel can't actually straighten his fingers as his skin is so thick on the palms of his hands. I had the same problem with my knees when I was his age, and I waddled like a duck haha I can laugh now, but at the time it was a bit distressing)


Painting with the children


Painting again with the children, had so much fun with this session was covered in paint by the end!!! lol


This is one of our 'stars' Lara, who is in the documentary I mentioned earlier in another thread. ITV have been filming two of our families doing a documentary about Ichthyosis, a day in the life sort of thing. They filmed it over a 12 month period and although they were supposed to come to the national get together yesterday to complete filming, they dropped out at he last minute. But we have been informed that the programme will be on tv, ITV sometime either at the end of August, or the beginning of September and is called 'Real Life - Harlequinn Sisters'. Lara has Harlequinn ichthyosis, the most severe type of Ichthyosis. Most babies born with this type of the condition only survive for a few weeks at the very most, Lara is now just over 1 year old, and also has a 8/9 year old sister (who will also be in the documentary) she too has Harlequinn Ichthyosis. They're both beautiful little girls.

Well that's my little story over with haha. Hope you don't mind me sharing this with you all :) Please if any of you have any questions you'd like to ask me about Ichthyosis or the charity then please do I really don't mind and I won't be offended. At the meet up yesterday I put my name down for another documentary for channel four. I just want to do all I can to help raise awareness of the condition and the charity. I'm also hoping to have some charity events later in the year, and you're all more than welcome!!! :D If anything I feel very lucky and very honoured to be a part of something that is... well to me so very special :)

Thanks for reading I really appreciate it :D

Mel

Thanks for the report ickle, very interesting read. Looks like you had a great time with the little ones :) Its great that you are be able to meet people and talk to people who have expirienced the same problems as yourself.

Lovely that Paddy is going to donate for you auction :) , I hope it goes well you'll have to keep us informed on how it all goes and let us know about your charity event later in the year :)

Will also have to keep an eye out for that programme later on in the year, you'll have to let us know when you know it is going to be on.

Thanks again Ickle lovely report :)

Thanks for the lovely reply Lisa :D Much appreciated, I'll keep you all posted about the documentary etc, and once I have a fundraising event organised I'll let you know, it'll more than likely be held in the north west though :D ;)

Mel

Thanks for sharing that icks, it was lovely. I'm glad to hear that the discomfort eases over the years. I have a few questions if you dont mind, the little girl in the last photo (who is so cute by the way! :) ), looks like her skin is quite painful, is it as sore as it looks? Is there any treatment or medicine, ie, cream, tablets etc that can help with the pain?

My heart goes out to the kids, but from your photos it looks like they had a great time painting and making a mess! :D

Thanks again ickle, I must admit that I hadn't heard of this condition before, so it was interesting to hear about it, and nice of you to explain it to us. I wish you all the best of luck with the charity.

Paddy is a little angel with offering to donate things to a fundraiser. :wub:

awww my heart goes out to those kids!

what you are doing icks is such a wonderful thing and i nearly cried reading this its so heart warming!

keep up the excellent work icks i'm sure its worth it and give my love to those wonderful little angels!

Thanks for your replies Haze, and Kay1!!!! And for your kind words. Like I said it really isn't a problem for you to ask any questions. In answer to your questions Haze. Yes her skin is very painful, her skin in very tight as you can probably tell from the photo, and her sister's is exactly the same.

Ichthyosis in general is also very fragile, so the slightest bump or knock can break or tear the skin. Mine I'm pleased to say has toughened up over the years, but I do still bump myself occassionally and the skin breaks and its a bit of a shock when it happens as initially it stings. But like I said, I now seem to be toughening up more and more. But with the children its much more fragile. There are no cures for Ichthyosis only treatments. These usually consist of creams, bath oils, etc. There are medicines too but I choose not to go down that route, as there were too many side effects for me personally, but for the people who choose to use the specific medication it does seem to benefit them. There is talk of genetic therapy, but this could take years to develop. Our charity hopes to raise funds to aid further research into further treatments and genetic therapy. Hope that helps Haze.

And Kay1, :( I didn't mean to make you cry sorry lol, thanks for your kind words. By the way Kay1, I have had an article in the MEN a few years ago in 1999. I was interviewed and shared my story with the paper to help raise awareness etc. I've had quite a few articles written since then too here's a link to one of them that was written in the Bolton Evening News in 2001 (I think).

http://www.thisislancashire.co.uk/lancashi.../SILVER0ZM.html

Its the only one I could find on the Internet. When I organise the fundraising event I'll be sure to let you know.


I've just had these pictures sent to me from Daniel's Mum and Dad and thought I'd share them with you.




Daniel at home

Thanks again everyone ;) :D

Mel

Superb report and pictures Mel.

You've got a lovely selfless attitude to life and I for one find it refreshing and inspiring.

Continued best wishes with your work.

Remember: wristbands!

Thanks for sharing that with us Mel, looks like you enjoyed painting with the kids!!!

You are a very generous and selfless person to be involved in something like this, i bet it's really rewarding.

Hats off to Paddy for offering signed stuff to auction, heart o'gold that fella!

Nice one Mel.. We're all proud of you! Especially as you can share something so private with people on here - who are vertually strangers

You've got to admire any people who give up their time and energy to help others - and raise awareness - I'm sure like me most people on here had never heard of this complaint.

And good on Paddy for offering to help

Maybe we could look at having an "official" charity of the forum or something... just an idea

Anyway Mel - keep up the good work

Thanks Donna and Dawneh for your kind words :D :D

Like your idea too Dawneh I'll ask Ian what he thinks? thanks :D ;)

Mel

great idea dawneh! :)

Thanks very much Magnet & Steel, that's really nice of you :D

I haven't forgotten about the wristbands either!! I've asked the committee about us having some made, I'm just waiting for them to get back to me about it. I'll let you know when I hear from them ;) :D

Thanks again (cheers)

Mel

Thanks for answering my questions ickle, I appreciate it! Daniel is soooo cute! :wub: Bless him!

Thanks for posting Mel. It was really interesting to read and see the pictures. I am glad you don't suffer too much these days.

great that Paddy is gonna help out what sounds like a good cause

Thanks very much Yorky!!! :D

And no problem Haze, happy to help (thumbs up)

Mel

Just thought I'd bump this thread up so you can see which charity I'm hoping to have the upcoming 'do' for (thumbs up) Would appreciate your thoughts about having the Ichthyosis Support Group as our chosen charity for the evening (thumbs up)

Thanks again for everything everyone

Mel

That is a top idea ickle, hopefully we can raise some money and have a great time too ;)

Thanks Lisa!!!! :D :D (cheers)

Mel

Sorry to hear what you have to go through with your complaint Mel. I think you are exeremely brave. Poor little Lara, she looks really poorly. I have PM'd the number you wanted.
Thanks for sharing the Pics, they are brilliant quality. (wave)

Thanks for your kind words Amarillo, just hope we can get more guests to post once we get this 'do' up and running (so to speak) we need more people from the forum to get involved and come along!!!!!! It's gonna be great fun!!!

Mel

a bit late posting in this thread. but

(sorry for my language , jonny will be after me now)

Sh*t Sh*t Sh*t why didnt i notice this thread then i live in coventry and i could have gone

:angry:

sorry about double posting.

i saw a program about this the other day.

and it was realy moving watching them with afew week old baby with the condition.