Where to begin again?... A fresh start

I’ve been wanting to write a new blog for ages now, but to be honest I just didn’t know where to start or what to say. Anyway I’ll give it a go as it’s been far too long since my last blog.

The reason I started my online blog was, not only to give an insight as to what living with Ichthyosis is like, but also to help raise awareness of the condition, I also have personal reasons for starting it too. I’ve always found in the past, that by writing down my feelings, thoughts and worries (not forgetting the good and fun things too of course) helps me a great deal. Until the last year or so, I always hand wrote these things on paper and more often than not ripped it up and threw it away. By doing this I felt like a weight had been lifted off my shoulders, which really helped.

So, I decided to start an online blog to share my experiences of living with Ichthyosis in the hope of helping others affected by the condition or similar conditions, and it is also a place where I can express how I really feel. By being a bit more open about how Ichthyosis affects me. I’ve always been one to bottle things up, put on a brave face etc, etc and now I feel it’s time for me to... not necessarily change that, but to be more confident and more honest with myself. People have commented to me in the past and have said things like “I don’t know how you cope with everything you have to go through and everything you’ve have been through. Yet you’re always smiling”. But that’s just me though, I’ve never known any different, having had Ichthyosis all my life, so it’s the norm for me, part of life so I just tend to get on with it, life’s too short. And I always say, there are plenty of people in this world who are far worse off than me so who am I to complain... so I don’t (complain that is).

Someone recently said to me “ I noticed something about you today, if anyone mentions about you helping others your face lights up, but as soon as anyone mentions you helping yourself you put the barriers up” and this comment really made me think. I’ve never really thought about it before until now. But it’s true, I love helping others especially when it comes to Ichthyosis because Mum and I had very little support other than that of family and close friends when I was growing up.

Anyone who knows me well, knows that I rarely ever complain and try to see the bright side of things (I can’t even complain if my food is cold in a restaurant haha). But believe me I have my moments when I’m having a particular bad spell of blistering etc. I am after all only human. Sometimes all I want to do is cry (and admittedly, sometimes I do, although not often, when I’m on my own when I’m bad with blistering). Then sometimes I just want to scream with the pain (but I tend to scream on the inside and don’t let it show). Somehow though, I always manage to get through it and grin and bear it so to speak.

As I write this I am lay on the bed, and the children are fast asleep. I had to come and lie on the bed because my leg isn’t too good tonight. It started late this afternoon with a couple of small blisters, and an hour later I checked them and they were bigger so I put a dressing on them. I have just got ready for bed and when I checked the blister (as it was really quite painful by now), the bigger blister of the five I have was much bigger. The largest one is VERY painful with four smaller blisters clustered together just above it.



I had no choice but to burst the large blister with a sterile needle (let’s just say it stung a little - and yes there was a hint of sarcasm there haha). I drained the blister and bandaged it up again but the pain is still there which is a bit unusual for me as the pain usually subsides pretty quickly once the blister is popped, as it takes the pressure off. I’ve taken some pain killers, in the hope it will ease the pain so I can get some sleep. Even sitting upright on the sofa my leg is too painful, it feels like I’m being constantly kicked... HARD. It’s not hurting as much now that I’m lay down, it’s when I put any weight on it, get up to walk on it that makes it hurt the most. Any kind of pressure no matter how subtle really hurts. I’ll have to change the dressing again in a few minutes, and I’ve only had it on just less than half an hour. The dressing is soaked through already and there’s blood too (I hardly touched it with the needle just pierced the top so it can’t be that that’s the cause of the bleeding - just in case anyone was wondering). I’m not used to any bleeding after bursting a blister that I can recall, ever in my experience. Which suggests to me that I may well have an infection (I‘ve had many, many infections throughout my life)... Great!

Anyway, I’ll finish this off now by saying that some readers may find my blogs and the photos I share on there a bit too graphic (blister and sores wise), or too much but all I want to do is be honest with my friends, honest with whoever reads it and also to be honest with myself. I’ve learnt a LOT recently (more of this will be revealed in future blogs soon) and by opening up more and actually speaking my mind, saying how I really feel and telling it like it is in blog form, all I can say is if it helps in the long term (whether it be others in a similar situation or indeed helps me) then it’s worth it. If you are offended by anything I write then all I can do is apologise. At the end of the day it is my life, my blog and I need to push myself to regain my confidence and I feel this is a good way to start, before I lose the plot lol.

Please feel free to follow my journey and thanks for reading.

Lessons Learnt

Long time no blog... Yet again. Hectic is one word I suppose you could use to describe things lately. In short, and without going into too much detail, here’s what’s been happening. Rebecca is now 4 months old, the time is flying by. She’s coming along nicely, continuing to do well, putting weight on and is really alert, looking around doesn’t want to miss anything and is taking everything in around her. She’s also started to chuckle and babble in her own little way which is so cute.

For the last 6 weeks however, Rebecca has been wearing an orthopaedic harness. She was born with a dislocated hip as well as her skin condition Ichthyosis. So in order to help the hip to develop in it’s correct position, she has had to wear the harness. We were at first concerned as to how wearing the harness would affect her skin. Would it rub her skin raw for example and would it be soft enough for her. Turns out it isn’t as bad as we thought it would be, and Rebecca has taken to it much better than we thought she would. The alternative to the harness though, would be surgery to reposition her hip, which in turn would mean that Rebecca would need to be in a plaster cast which would go up to her chest and she would have to have the cast on for up to 16 weeks. This would definitely not be good for her skin, as it is so fragile, and vulnerable to infection and blisters frequently. So the harness was the best option, as regards causing as little trauma to her skin as possible. The good news is, after regular weekly, then fortnightly visits to Manchester Children’s Hospital for checks, her hip is doing really well. The consultant is really pleased with her progress, and says it is doing much better than she expected. It is looking very promising that the harness will be removed in around 4 weeks (well, just less than 3 weeks now as I type this). Anyway, that’s the EXTREMELY short version of events about this, but the whole thing has been... An ‘experience’ shall we say.. Let’s just say a strongly worded letter is being written to the hospital (it’s a very long story which I really don’t want to go into at the moment).



Rebecca wearing her harness and still smiling

Other recent events have made me think a lot about everything generally too (nothing to do with skin just in case you were wondering by the way). Let’s just say I’ve learnt a few lessons along the way, including the fact I’ve learnt a lot about myself. Things have happened that have made me think about things differently. Some of the things that have happened were negative, but from them, if anything it did me a favour or should I say the people involved have done me a favour by behaving the way they did, so thanks for that (again I won’t go into it here as it’s more trouble than it’s worth in all honesty). I also learnt the true meaning of friendship from this.

They say things happen for a reason, and I’ve always been a strong believer of this. Recent events have also kicked me into touch a little as regards the fact that I need to regain my self confidence, to be more assertive in my ways as I’m far too soft and polite for my own good sometimes haha. Also to push myself that extra mile to achieve more, to find it within me the motivation to follow through tasks and goals I set myself (although so far in life I have always achieved what I set out to do, things have slipped slightly of late).

The question now is... Could I possibly fit anymore into a day? And my answer to that is simply this... I honestly don’t know but I’ll give it a damn good try.

Long time no blog... and I'm a Mum again!

Well what can I say? this blog is a long time coming. Been gearing up to write a new entry for ages now, yet everytime I do finally get around to it I'm either too tired or my mind just goes blank. Oh well, I'm here now and have I got some catching up to do?!!!

Just looked back at my last post here and I can't believe it was posted back in August last year!! I can only apologise for my lateness or should I say laziness. So much has happened that I'll probably forget most things. Since my last post life has been a mixed bag shall we say, full of ups and downs. Basically, lost a friend in October, then my aunt also passed away on Boxing Day amongst many other things that have happened.

But I'm not going to get all depressing on you, so here's my good news.... in fact forget good and replace that with GREAT! On 10th February 2011 I had a beautiful baby girl Rebecca Grace. She was born full term, but weighed only 4lb 11oz. She was also born with Bullous Ichthyosis (aka EHK) like myself. She was in special care for 2 weeks in an incubator and I was in hospital for a week as I had an emergency c-section. We've had great support from the hospital team, given great contacts and lots of help. But everyone keeps telling me I'm the expert when it comes to our condition as I have the condition and live with it. I can understand their good intention with this comment but at the same time, I don't have the medical knowledge. I mean, it's one thing doing your own treatments and caring for the condition yourself, but when it's your child it's completely different. It's really difficult to explain what I mean.

Rebecca, like myself was red raw when she was born. But to cut a very long story short she is continuing to do well. Feeds really well and is continuing to put on weight nicely. Her skin is up and down, and she has had a few blisters but otherwise she is doing really well and I'm so proud of her. She's so bright and alert and is starting to take everything in around her and she's only 8 weeks old. Here is a photo of her at 7 weeks old:



Now, as a Mum to a young baby with Ichthyosis I have many questions and I still have lots to learn. I'm learning all the time. And no doubt as time goes on I will be writing about certain issues on here. Sometimes however, it's finding the time to sit and write thesedays. I will do my upmost to keep up with this blog though, in the hope it will help others, also to encourage other parents of children with Ichthyosis to get in touch if they would like to chat. Please feel free to contact me if you wish and I'll do what I can to help. It'll be great to chat to other parents who are going through the same thing. I'd really like to get in touch with any other Mum's out there who have EHK and also have children with the condition too, so we can share our experiences and help each other.

Anyway, that's me done for now, but I'll be back again soon. Before I go I'd just like to take this opportunity to thank all those who have been there for me recently, and to my friends for all their support, kind words etc it really means a lot to me and is most appreciated. Thank you all and take care xx

Flying Visit

Hi folks, I’m back after a long absence. I know it seems like I keep repeating myself when I say that things here have been hectic, but yet again this has been the case and time has caught up with me. So please bear with me.

Going back to May (yes, I know...), on Sunday 23rd May my father in law took part in the Walk for Skin in Manchester (in association with the British Skin Foundation), to help raise money for the Ichthyosis Support Group (ISG). Also taking part was Katrina Hughes, her partner Kevin Tuohy and their daughters, Abbie, Ellie and Hannah. Ellie is 3 years old and like myself has Bullous Ichthyoids (EHK). It was a great day, the weather was perfect if a little too hot for me, so there’s no way I could’ve done the walk myself. Ellie was a star though, she completed the walk along with her family in the heat and she did fantastically, far better than I ever could have.







To show our support, myself, my husband, my mother in law, my Mum and our good friend Joanna went along to meet them all at the finish line at The Lowry. We al had a lovely chat at the end and are keeping in touch which is great. My father in law raised £140 for the ISG and Ellie’s just giving page continues to exceed her £500 target, which is fantastic. I’d just like to take this opportunity to say a big thanks to my father in law for taking part in the walk for skin it means a lot to me. Also a big thank you to the Tuohy family and a big well done to Ellie, she truly is her Daddy’s little warrior. Big thanks should also go to everyone who took part in a walk for skin event all across the UK.

In other news, we have recently moved house. To cut a very long story short and without going into too much detail. We were not happy where we were living. It was on a main road, we had major problems parking our car (we had no drive or garage and added to that the fact that we had national express coaches parked outside or very close to our house virtually every night for weeks on end, it was ridiculous to be quite honest but there was absolutely nothing we could do - although I did put in a complaint to National Express about the situation and all I got was a reply telling me that the vehicles I mentioned - including their registration numbers - didn’t exist on thier records therefore must not be National Express coaches LOL how do they explain the fact that they had the usual ‘National Express’ logo all over the sides of the coaches and the 540 London as they usually do in the front idiots!! Anyway.... Enough of that lol). Also where we were living it wasn’t all that safe for our little boy especially now he is toddling, being on a main road and all that, and there are other reasons we weren’t happy there too but I won’t go on. Anyway, where we’ve moved to now is much nicer, much quieter, we have a lovely garden and our own drive. There’s even a lovely little park next to the house for Daniel to play on which is great, and he loves it so far.

Also since we moved, Daniel has celebrated his first birthday which was lovely. We had a combined birthday/housewarming party for him at our new house and all our family and our good friend Joanna joined us to celebrate. Everyone had a good tie especially Daniel which is the most important thing.



Hopefully it won’t be too long before my next entry. Until then..... Thanks for reading

Back to School

Well, I’ve done it, just started two courses with the Open University yay! The courses officially started yesterday (Sat 1st May) and I’m very nervous but at the same time very excited. I’m studying ‘Listening to Music’ and ‘Shakespere: an introduction’. It’s been a few years now since I did any studying, in fact the last bit of studying I did (completed the courses in full) was with the OU in 2004. Back then I did two short courses in sciences ‘Studying Mammals’ - based on the popular tv series with Sir David Attenborough, and ‘Global Warming’. That was back when I was really interested in conservation and animal behaviour. I still have a keen interested in these subjects, but now time has gone on and I really feel it’s time to seriously knuckle down and aim for a degree.

After thinking long and hard over a long period, I decided to follow my heart and study towards a degree in Arts & Humanities, or maybe an open degree where my subject area will be more varied). I know it’s going to take time and patience and that it won’t by any means be easy, but those of you who know me well will know I’m a determined soul and will give it my best shot.

There are so many subjects I’m interested in though, and over the years since leaving school in 1994 I’ve done many various college courses including media studies, business administration and sound engineering to name but a few. But if I was asked where I would like to be job wise in a few years, I think I’d have to say either as a sound technician in a theatre, a charity fundraising officer or teach music in some way (maybe teach music to children with special needs). I also wouldn’t mind trying my hand at writing, I know I’m not that good a writer as I know I tend to ramble on and on a bit in my blogs and they can be a bit long but..... I’m sure I can learn these skills as I go along with my studies. I hope to complete a course with the OU in creative writing at some point too. But alas, I’m starting from scratch at the moment, and so have to take things step by step.

I chose Listening to Music, for obvious reasons - my love of music. And as for Shakespere, well I’ve always been curious about the subject but sadly can’t recall even studying him in school which I think is really quite sad - English was my favourite subject at school too. So, I’d like to give it a go and see what it’s like. I know at the moment it’s all a bit overwhelming, and it may take me a bit more time than the other students on this course to take things in, but I’m there for the same reason as they are, to learn. Hopefully we can learn from each other too. I must admit I did feel a bit intimidated and overwhelmed by the Shakespere course when I was reading the course website and lots of the other students were already talking ‘Shakespere’ and had said they’d already made a start on the course. I thought ‘ooo-eck, I’m going to be so behind here, I haven’t got a clue what’s going on’ but the more I read, and started to join in with the discussions the better I felt.

My only worry now is fitting everything in, my daily routine looking after my skin is a challenge in itself, but there’s also all the other usual every day things to do and of course my little boy to look after. I’ve had a brief chat with another student who has three children and is doing a degree in Child Psychology I think and has started the Shakespere course in addition. She’s been great in reassuring me it can be done, and I feel much better for that so thank you :-)

Anyway, onwards and upwards. Can’t wait to really get stuck in with these courses, I just hope my worries and fears about it all fade soon once I get going with it all.

Wish me luck :-)

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

Treatments & Prescriptions

I thought I’d write a blog about prescriptions so that others can find out how we, as Ichthyosis sufferers go on as far as getting prescriptions are concerned, regarding our creams, emollients etc. Also in the hope that other sufferers might contribute their experiences via comments here, so we can see how different places/countries policies’ are regarding prescriptions etc. I can obviously only speak from my own experiences so here goes.

The amount of treatment/creams, emollients etc that I need is huge. Every day I need to apply creams to every inch of my body at least twice a day. That was the case when I was using Diprobase cream, which I had been using for several years up until a couple of weeks ago. I found that because I’d been using the same cream for so long, it became less and less effective in treating my Ichthyosis. In other words, I get little difference in the way of dryness of my skin once I applied the cream.

A couple of weeks ago, my routine changed and for the better I’m very pleased to say. I was prescribed two creams to try Dermol 500 (which contains an antibacterial agent/ingredient)

and Doublebase gel cream.

Through trying different methods of applying the creams over the last fortnight or so, I have found a method that works best for me. This method involves, showering/bathing using the Dermol 500 (Dermol 600 emollient in the bath) as a soap substitute, I then pat my skin dry once my skin has been rinsed. As soon as I get out of the bath/shower I then apply the Doublebase gel cream whilst my skin is still soggy. I then wait for about 10 minutes or so to allow the cream to soak in, before re-applying another coat of Double base (sounds like I’m redecorating lol). I then wait another 10 mins or so to allow the cream to soak in again, before I get dressed.

Using these creams, especially the Doublebase, my skin feels great straight after using it, and I also feel much better within myself too. I feel like I can move for a start!! When I’ve applied this cream, my skin feels really well moisturised, really clean and refreshed. I know that using these creams in the summer will help temperature wise too, because with Ichthyosis we can’t control our body temperature. The creams will help in that they will be cooling and refreshing once applied - however this coolness will not last very long at all.

Now unfortunately, due to the nature of my skin and the way it functions (or lack of functioning properly I suppose I should say), no sooner have I applied the creams I find that the second the air gets to my skin the drying process starts again immediately - even more so if there’s so much as a breeze outside. Therefore, I need to reapply more Doublebase again.

Throughout the day, every day, I need to apply the creams anything up to four or five times a day (depending on how often I need it, and how my skin is at the time). Yes, this can be a tedious and time consuming task, but the benefits of how good the creams make my skin feel makes it worthwhile to me. I don’t mind my new routine. Now I’ll be honest, it’s not easy having to keep applying the cream throughout the day especially fitting it in around everyday life and looking after my young son too, but I’ve accepted that this is my way of life. Personally, I think that once you ‘accept’ things the way they are, it’s then much easier to adapt and work with it rather than against it - if that makes sense?

As I need to apply my creams so often, I’ve found I am using one 500g tub of Doublebase in just 4 days. Therefore, regular repeat prescriptions are necessary. Thinking about it, the need for these creams is just as essential to me (or any other Ichthyosis sufferer for that matter) as any other medication is essential for anyone with a serious illness. Basically, cream is my oxygen it is my lifeline I need it to survive. I know that sounds a bit dramatic and some may think that’s taking it a bit far.... But think about it...... It’s true! Without the creams to keep any kind of moisture on my skin, well it just doesn’t bare thinking about. I have gone without cream on just a couple of occasions throughout my life, and let me tell you I paid for it!!! The agony is unbearable, skin splitting in every crease, hardly able to move especially the joints. The only way I can really describe the dryness is the feeling of chalk dust - you know the feeling of chalk dust on your fingers when you get it on your hands? Well imagine that but 10 x worse and on every inch of your body and you’ve pretty much got the jist of it.

Back to prescriptions though, when I need more creams, I need to go into my Gp’s surgery which is in town (only about a mile away so not far). I drop off the prescription slip there with the items I need ticked off the list, then I have to wait 48 hours for the prescription to be processed and signed by a doctor. I then go back to the surgery 2 days later to collect the prescription and take it to the pharmacy which is downstairs in the same building, and wait however long it takes for them to process the prescription (I’ve had to wait around 1 hr 45 mins in all for one lot before now). Then sometimes when I go to collect my items they don’t always stock it, or enough of it and I have to go back once it’s in stock - which is a bit frustrating when you really need the stuff and you’ve already been hanging around for God knows how long, make your feet sore by having a little walk into town to pass the time while you’re waiting, only to go back and find they don’t have everything and have to go back again etc. But hey-ho this is the norm for me, this is the procedure I have to follow as it’s the same as everyone else and I respect that. I’m writing about this just to inform people this is what I have to do every time I need more creams. And this whole proceedure I have to go through every two weeks, which is how often I need to order a repeat. I don’t know why though, but I feel so uncomfortable having to order so much stuff so often, like I’m a nusciance. I shouldn’t feel like that I know, but I do. It’s really difficult to explain. I’m sure there is more I could talk about regarding this subject, but I feel I’ve said enough this blog is too long as it is lol sorry folks. I just feel it’s important to let people know exactly what it is we have to do every day of our lives... Just to live pretty much, putting it bluntly. Speaking of which I need to re-apply some cream now, skin’s getting a bit tight and ‘chalky’.

So.... What is the proceedure where you live? Do you have problems? Is stock supplies a problem? Let us know, share your experiences. Don’t forget you are more than welcome to share your experiences on my website too at www.Friends-of-ichthyosis.webs.com

TTFN!!!