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!!!

Mind's gone blank & New treatments

Been wanting to write a blog for ages, well I say ages, just since my last blog entry. But for some reason, despite the fact I have plenty I could blog about my mind has gone totally blank and I have no idea where to start. Who'd have thought... me with nothing to say lol oh well...

It's been a bit of an up and down couple of weeks, but mainly ups I'm pleased to say. Starting with last week, I had a couple of blisters on my right leg on the inner calf and just behind my ankle (not that you needed to know that but....). Here's a couple of photos of the blisters.... I know I've said this before but I'll say it again. Some people may find the photos a bit... er... 'graphic' and I've got to admit I've always been wary of letting anyone see my skin when it's bad - one of my weaknesses, I care too much about what other people think really - but the whole point of me doing these blogs is so that it's an opportunity for me to show people exactly what it's like to have Ichthyosis (Bullous) and it's so difficult to explain when you can't 'see' me. So photos is the best way, and really I wouldn't be 'telling it like it is' if I didn't show such photos. So apologies in advance if the pics offend anyone, but hey ho this is the norm for me as regards my condition, it's the way it is and there's nothing I or anyone else can do about it so....





These blisters are now almost healed now, which is good. I've recently had an appointment at a local dermatology clinic too which went really well I'm pleased to say. I haven't seen my own dermatologist for 4 years, so I've been discharged from there. I'd been a patient of my own dermatologist since the age of 3 too! I was doing ok though as regards my skin and I really felt nothing much more could be done and I was happy with the treamtents I was on at the time. I therefore didn't want to take up appointments that could be needed by others more than myself, another reason I stopped going.

The treatment I was using was Diprobase cream which I used for several years. But more recently I've just felt it wasn't of any great benefit for me. Especially with the really bad winter we've had this year here in the UK. The cold weather has really affected my Ichthyosis drying it out much more rapidly than it usually does (which is bad anyway). I felt it was time for a change and to see if I could possibly try something new (or something new to me anyway). I couldn't see my own dermatologist as I'd been discharged, so had to be referred to another clinic first to be 'assessed' which I thought was a bit daft, but me being me went along with it as I know it's probably their usual general procedure etc.

Basically, I saw the dermatology nurse at this clinic and I can't begin to tell you how good I felt after this appointment. The nurse was great, couldn't fault her, she was so helpful and has given me lots of sample creams to try also some cream to try as my main creams. She gave me Double Base and Dermol 500 to use as a general cream all over, also to use these while in the shower or bath as a soap substitute. I then apply the Double Base straight away as soon as I get out of the bath or shower (using Dermol 600 emmollient in the bath too), then wait about 10 mins before applying the Double Base once again. The results of applying these creams has made such a big difference, and I love the feel of my skin afterwards. I feel like I can move for a start lol the joints being the most problematic, as the skin is so thick it makes mobility restricted. Using these creams also makes me feel really clean and refreshed after applying them too - with the other cream I just felt like I was applying and applying and just getting clogged up in a way (it's hard to explain really). I know these new creams I'm using will also benefit me in the summer too, as they are lotions so when applied it will feel really cool and soothing.

The only problem I do have is that the effects from these creams doesn't last very long. I'm finding that I'm having to re-apply the creams several times a day, but I tell you what, it's worth it because the benefits of how it makes my skin feel far outweigh the actual process of applying, even though it is time consuming. It's a whole new routine for me and will take time to get used to, but I'm getting there.

To help try and retain the moisture from the creams, the dermatology nurse I saw last week has suggest I try a body stocking, like a bandage stockinette but for my body. A bit embarrassing, but hey who's going to know other than me that I'm wearing it. I'm currently waiting for the stockinette to be delivered to the pharmacy so I can pick it up, as it has to be specially ordered apparently eeek! no idea how long I'll have to wait for it. The dermatology nurse also said something to me that I've never had said to me before by a medical professional... she said that if ever I needed anything or if ever I was feeling low and my skin was getting me down, that I could call her. I honestly can't begin to tell you what a relief that felt. I really felt that she was genuinely interested in my condition and fully understood where I was coming from. That's not to say I didn't feel the other dermatologists I've seen in the past didn't do the same because they've only ever done what they felt best for me, and have helped me greatly I can't thank them enough for how they've helped me over the years. But to have someone, a medical profession close to my own age that I can talk to means a lot and has boosted my confidence believe it or not. And has given me the kick I needed to get my motivation going again.

I know something else too... I'm going to go through a hell of a lot of the creams too but that's going to be another blog entry all of it's own. I feel it's important to bring up the subject of prescriptions and what we as Ichthyosis sufferers have to do, use and the amount we need etc and the fact that different places have such different rules/regulations as regards prescriptions etc. But like I say, another blog.....

Apologies for the long blog, didn't intend for it to be this long, but oh well. Thanks for reading, if you managed to get this far lol I really appreciate it :-)
Take care
Mel xx

Long Lost Friends

Well, what a couple of weeks it’s been. I’ve got behind with blogs etc again lately, mainly because I’ve been busy, but also by the time I’ve had the chance to write a blog I’m just too tired. Anyway, something happened over this fortnight and I’d like to share the story with you.

In 1982 my Mum was introduced to two families who had children with the same type of Ichthyosis as I have (Bullous Ichthyosis). One of the families had a young son with the condition and the other family had a young daughter with the condition. Even less was known about our condition then than is known now, and our parents thought they were alone in having children with this debilitating condition. That was until our consultant dermatologist introduced us in 1982.

As I was so young at the time of our meeting (I was around 4 years old), I can’t really remember much about it and therefore thought that I’d never met or seen anyone else with the same condition, until I attended the ISG (Ichthyosis Support Group) first National Day in 1998. Over the years my Mum often spoke of the families we met back in 1982 though, and she often thought of them and wondered how they were getting on. After this first meeting we sadly lost touch, and have since then been trying to find each other.

A couple of weeks ago, I received a message on face book from someone named Joanna, and it turns out it is the same Joanna that my family and I met all those years ago. We are thrilled to be back in touch with each other, and we also found out that after all these years we live not far from each other too. I replied to Joanna’s message straight away and since then we’ve kept in regular contact, catching up and have spoken on the phone a few times too. On Good Friday (2nd April) we finally met, and I can’t tell you how lovely it was to finally meet again after all this time. Now, this may sound daft to some people, but it felt like I had found a long lost sister. Even though we only met the once when we were really young, when we met on Friday it felt like we’d actually known each other all that time and hadn’t been out of touch (if that makes sense?). It was an emotional reunion for both of us as you can imagine, and we got on so well and found we have a lot of the same interests including the same taste in music (mentioning no names *cough* Darren Hayes & Pink lol)and we both love 80's music too.

We’re definitely going to keep in touch and I know we will become firm friends. We still have a lot of catching up to do, but we have plenty of time for that now. We now both have someone close to home who we can talk to, someone who understands what we go through with Ichthyosis. We are also planning to start our own kind of support group in the Manchester, Bolton and surrounding areas (as we know of a few more people affected by Ichthyosis in the area now too). In the hope that we can bring fellow sufferers together to share their experiences, offer support, information, organise events and meetings and generally just be an ear or shoulder for those affected by the condition. Just in case you haven’t seen it here’s a link to the website:

Ichthyosis Awareness Week is coming up here in the UK, and we will be doing our bit to contribute to that - but that’s another blog which will be coming soon.

I’d like to say a huge thank you to Joanna for getting in touch. I can’t tell you how happy I am that you did. You are a wonderful person and I am proud of you too. You may not realise or believe me when I say this but, you inspire me. Sorry to get all soppy but it’s true.




Thank you - Friends for life :-)

Catching up

I’ve got a bit behind with blogs this last week or so with not being so well. Basically, I had a bad cold and it really took it out of me. It’s been ages since I had a cold like that and it knocked me for six really. Started with my knee blistering, which cleared up then soon after the cold hit me. I’ve been generally run down though, very weary and had a blocked ear so I think it must’ve been a head cold. I went to the doctors and he prescribed me some ear drops which haven’t really worked and I’m still having trouble so it looks like I’ll have to go back to the docs Anyway...

While I was at the doctors getting the ear drops, my main reason for going was to get the results of my blood tests. I phoned up the week before to get the actual results and was asked to make an appointment with my doctor as there was a problem with my thyroid apparently. He explained that I am bordering on having an under-active thyroid. He said ‘bordering’ because it is not quite under-active but my pituitary gland is over compensating for the thyroid gland not functioning as it should, hence why I’ve lost weight etc over the last few months or so. The doctor says it would be pointless to treat it yet as there is a possibility that it could correct itself, so he wants to give me another blood test in two months to see how it’s going and we’ll take it from there.

The thyroid problem will explain a lot of things though, symptoms I mean. Generally run down, dizzy spells, tired all the time, loss of appetite (which is soooooo not like me!) etc. This has been going on for a while now, I know something isn’t right somewhere, and I‘d be lying if I said I wasn‘t starting to get worried - then again if you know me well you‘ll know that I worry about everything and anything lol . The doctor also said that the thyroid problem is a common thing after having a baby too which could also be the cause in my case.

In other news, just to update those of you who read my blog about my hospital ‘experience’ regarding having my bloods done. I’m pleased to say that I got a call to tell me that my complaint has been dealt with. The lady who rang from the hospital’s complaints department told me that the nurse in question had been spoken to about her attitude. I ended up telling my side of things over again because the lady from the hospital asked me a few questions to confirm a few things from my side regarding some things the nurse had said from her side of the story which weren’t exactly true (I wasn‘t impressed shall we say grrr...). I put it right though and told my side, and told them exactly how the nurse made me feel. The lady from the hospital was lovely though, we ended up having a good chat about things and she was very understanding. She asked me if I wanted to take the complaint any further and I said no. I just wanted to make them aware of what had happened, as I don’t want it happening again to someone else. I was also told during this telephone conversation that, notes were NOT taken about my condition etc as I assumed they did when I first rang the hospital to make the initial appointment for my bloods. I was under the impression that, as the lady I spoke to at the time asked me to spell the name of my condition, I thought she was making notes. I explained my condition pretty much from scratch which can take a while shall we say, as it was important I felt, that she and the staff there were made aware of what to expect when I arrived for my appointment. But it turns out that this wasn’t the case. Apparently all that was written down was ‘Uncomfortable with needles. Cream’ or words to that effect. So I said to the lady from the hospital complaints department, ‘so you mean to tell me that I explained everything, went through it all for nothing’ and she said ‘it appears so, and I apologise for that’. I made it clear that I wasn’t impressed by this. Like I say though the lady from the complaints department was lovely, and she said that the nurse in question would be spoken to again following that conversation on the phone. She apologised sincerely for the distress it caused me and ensured me they will take measures to ensure this doesn’t happen again. Oh well, it’s over with now onwards and upwards.

Media Frenzy

I thought this would be an interesting issue to write a blog about, as it’s something that’s been on my mind on a regular basis, not in the sense that I dwell on it, but just something that springs to mind now and again. Mainly when I see a feature in the media.

Several times now I have been approached by journalists asking if I’d like to share my story of living with Ichthyosis. There was once a time when I wouldn’t have hesitated, and I have already shared my story several times in the local newpapers, even a national women’s magazine. However, from the experiences I’ve had from sharing my story with such publications, I have learnt a lot about how the media works in both a positive and a negative way.

The way my story was written in these publications in the past was only an interpretation of my experiences. I was often misquoted, the explanations and descriptions of some aspects of the condition were inaccurate, exaggerated or completely misinterpreted altogether. Things were turned around to make the journalist sound good, to even make them sound ‘educated’ about the condition, yet they couldn’t possibly understand. Fair enough, they may well have done their research by talking to me but spending an hour with someone doesn’t make you an expert all of a sudden. I’m not saying that’s what all journalists tend to do, but I do find it’s what happens more often than not.

We are all well aware of how the media works in the sense that the more shocking the headline or story is, the more attention it will draw from the public. This may well be good from a sales point of view, but what about the overall affect/impact it can have on those involved - the people whom the stories are being written about. Sadly this is something I feel will never change, and something that nothing can be done about. By sharing any story with the media there is always the risk of it being blown out of all proportion.

The most recent approaches I’ve had from journalists have also offered money for my story. This is something I totally disagree with. When I share my story I like to think I do it for the right reasons, to inform, raise awareness and educate people about the condition. My story is just one example of what Ichthyosis can be like to live with, but there are so many different forms of the condition and even those with the same form of Ichthyosis I have (Bullous/BIE/EHK) suffer and cope with it differently to the way I cope and how it affects me. We’re all individuals at the end of the day... but we’re also humans!

This leads me onto the next issue regards to the media and their ‘shock tactics’. Whilst on the net over the last couple of days, I’ve spent a few minutes researching for articles about Ichthyosis and I found a few but not that many. One that did stand out for me which I found absolutely appauling was this one: **you may have to copy and paste the link**

http://www.samaa.tv/News17704-Baby_born_with_rare_genetic_skin_disorder.aspx

It’s about a baby born with Harlequin Ichthyoids (one of the most if not THE most severe type of Ichthyosis) and the report truly is appauling. They basically had the child on show like some sort of freak show it's shocking. I don't think I'll ever understand the media and their need for shock tactics, yes I know it brings in viewers and readers, but at the same time, who is most in the wrong in that respect? the people who put out the reports, those who write the articles or the people who read them? It's a fine line really, and it's something I feel will never change sadly. In a sense I suppose you could compare it to rubbernecking, or like when there’s been an accident on the road... Why is it that people still insist on going over to have a look at the gruesome scene despite the fact they know it will shock them? Maybe that’s a bad comparison I don’t know but it’s the only one I can think of off the top of my head - apologies if I’ve offended anyone with this.

I’ve recently shared this issue with my friend Carly (yes I do consider you a friend Carly, even though we haven’t known each other that long). She too has many of the same thoughts as I on many issues regarding Ichthyosis and the way it is portrayed in the media. She also pointed out to me how she finds that people who approach her, saying they saw something about Ichthyosis on TV or in the newspapers, and that by reading about it or watching it on TV they somehow assume they know ’everything’ there is to know about the condition, and assume there’s nothing else to know. They don’t realise just how wrong they can be in making such assumptions.

Carly’s blogs about her experiences of living with the Ichthyosis are truly inspirational (I know you probably hear that a lot from people Carly but it’s true, especially for fellow sufferers). Please feel free to read Carly’s blogs here: http://carlyfindlay.blogspot.com/ They are well worth the read, she writes so honestly and with great spirit and has a fantastic sense of humour. I’ve also learnt a lot from her blogs about the type of Ichthyosis she has too, as it‘s a different form of Ichthyosis than I have. She also tells me she’ll be writing a blog about the issue of the media too, so please be sure to check it out as I’m sure it’ll be a much better read than this one hehe.


Like Carly recently said to me though, our stories are best told by us and I totally agree. After all we’re the only people who really, truly know exactly what it's all about and what it's like to live with Ichthyosis. And what better way to do this than by writing about it in our blogs. That way, we have total control over what is said and it's in our own words to the final letter. Don't get me wrong, I'm all for raising awareness, as long as it's done in the 'right' way if there is such a thing. The way it is done is really important I feel. I’m more than happy to share my story, as long as it’s in my own words and told by me. Like I say, I’ve learnt a lot from past articles.

Just before I sign off from this blog, here are a couple more links to some newspaper articles for you to look at. Please if you can, take the time to have a look as I’m sure you’ll find them of interest. **you may have to copy and paste the links**

http://www.thesun.co.uk/sol/homepage/news/2872732/Fish-boy-stuns-Chinese-docs.html

http://www.mirror.co.uk/life-style/real-life/2010/03/04/netherton-s-syndrome-a-mother-s-story-115875-22086254/

http://www.itv.com/lifestyle/thismorning/healthandwellbeing/nethertonssyndrome/


Thanks for reading

Knees Up

Since the hospital visit on the 22nd Feb (including the days leading up to it), my leg hasn’t been too good. It started with a small blister on the side of my knee and was really sore, stung like mad and was really painful, even though it was only a small one. Funny how it’s always the small ones that seem to be the most painful isn’t it?...

Anyway, by the time I woke up the next morning it seemed to have calmed down and it wasn’t as sore. But by that same evening, another blister surfaced, this one was bigger and more painful and it felt like my leg was on fire where the blister was. This same ‘process’ went on for several days. Up and down, up and down. Just as I thought 'ah, it's calming down' it started again, can't always get my hopes up when it 'seems' to clear up. It doesn't always necessarily mean it's cleared up altogether if you know what I mean?

After my hospital visit/experience though, well I’m not blaming the whole incident for my bad knee, but it certainly didn’t help as stress definitely seems to be a significant factor in triggering off the blistering as well as general infection these days. My knee just got worse, not bad enough for antibiotics but let’s just say it was very painful and generally made me feel ill within myself, as the blisters often do. It was too painful to straighten my knee at one point.

I’ve posted a few photos of my blistered knee. It’s the first time I’ve ever shared such pictures of my condition with my friends, let alone the public (apart from a couple I posted on my website when I felt brave enough one day). Yes the photos to some people may be a bit graphic, but at the end of the day I and no-one else can control how my condition is or can be. It is very unpredictable, as are the blisters. I never know where, when or as to how bad they will be. It’s just a case of taking it as it comes and dealing with it as and when. I've never known any different, and the blistering is the norm for me all part of the Ichthyosis.

So, apologies if I offend anyone by posting these pics, but as I’ve said previously, I started this blog not only to keep my friends up to date with what’s going on in my life (to a certain extent), but also to share my experiences of living with Ichthyosis and to raise awareness. I therefore, feel it is very important to tell/show it like it is, so that people can better understand just exactly what it means to have Ichthyosis (in my case Bullous/EHK) and what is involved. I now also have a bad cold which I think has developed in response to the blister. Sometimes when I get a flare up of blisters it can mean a full blown cold will soon follow. Somtimes it can take a while to develop into the cold, sometimes as long as a few weeks, which is what has happened here I think. This winter has been really rough here in the UK this year, and I've found it difficult if I'm completley honest because it's really hit me hard as regards my skin. But hey-ho, tomorrow is another day :-) (the photos were taken on the 4th & 5th march 2010 by the way).








Thanks for reading

Anniversary

I can’t believe it’s 12 months since our wedding day. Today is our first anniversary and blimey has the time flown. My husband and I had a wonderful day, spent with our loved ones and friends. Memories of the day will forever be in our minds and our hearts. And I’d like to take this opportunity to thank everyone who shared our special day with us, everyone who sent messages etc and to those who have sent messages today.

When I think back over certain times in my life, I can honestly say hand on heart, that I never thought the day would come that I would get married. Of course it’s something I always hoped for, but meeting that special someone who loved me for the person that I am I thought would never happen. Going back to life as an Ichthyosis sufferer, having the condition can affect many aspects of your life generally. It can affect things that a lot of people take for granted, also things that many people generally have reservations about or are self conscious about. Having Ichthyosis can have a great effect on your confidence and social life for example. Constantly aware of people staring (of which I’ve had my fair share of and still do), being judged because of the way you look on the outside etc. There are some really cruel and downright nasty people out there. But I put it all down to fear of the unknown, in some cases curiosity yes, but overall, it’s down to plain ignorance. I personally would much rather someone came over to me and asked me about my skin instead of standing there gawping - if anything I feel sorry for the person staring, they make themselves uncomfortable because they don’t know how to handle it. It makes me really angry sometimes too, because I sometimes think, hang on a minute I’m the one who has to live with it shouldn’t I be the one feeling awkward? But the truth is, I don’t. I’ve accepted my condition, and that it is a part of me and the way I am. But it’s not ’me’, by that I mean I’m not going to let the condition take over my life. I have Ichthyosis ’it’ doesn’t have me - if that makes sense? Other little things I used to get embarrassed about when it came to letting anyone into my life so to speak, were things such as ‘How are they going to react when they notice how my skin sheds so much?’, 'how are they going to react when my skin breaks' - will all this put them off? You ask yourself so many questions, but at the same time I learnt to deal with it in my own way and told myself, if they can’t accept me for the way I am then maybe they’re not worth knowing quite frankly.

Anyway, back on topic lol Right now I feel very lucky, and very blessed. As cliched as it sounds, I knew as soon as I met my husband we would be together. We’re a great team, and he’s accepted me for who I am ‘warts an’ all’ so to speak. I won’t go on too much about the details, as a lot of it is personal, but what I will say is that I am so grateful, for everything he is and everything he does for me. We also have a beautiful son, and again we are so lucky as there was a 50% chance that he too would inherit my Ichthyosis. He is clear of Ichthyosis and both he and my husband are my world.

Sorry for getting a bit deep and soppy but I just felt it was appropriate to talk about this as it’s our anniversary.

Thanks for ‘listening’ and most of all thank you to my hubby for everything!!!