Honesty.

So firstly I should start by wishing everyone a Happy New Year even though it’s a little late I hope everyone had a wonderful festive period and is enjoying the beginning of 2014..

My year has been great so far in the first week I turned 21 and i’ve been enjoying myself spending time with my friends and family. Although I’ve been enjoying myself and everything in my life is good, my psoriasis has been causing me a little anger and alot of pain.

111.

I stopped taking my ciclosporin before christmas and my psoriasis made the most of returning very quickly and following this cracking an awful lot and making my life very painful to the extent I had to slow down what I was doing and give myself time to breath.

When my psoriasis flares up I tend to find myself in the same routine getting angry at the fact I have it, spending my time trying to justify that its ok to feel angry and in alot of discomfort as my psoriasis tends to attack my hands first. When I give myself time to breath and reflect I can generally bring myself to my senses quickly and realise that things could be worse!!

The problem I generally have is that for the last few years I have used ciclosporin to clear my skin using it in periods, and it works fantastic for me personally and I can clear my skin completely at times however a year ago I got my first full time job and I have found it hard to combine using this treatment and going to work. Ciclosporin gives me great results with the consequence of me feeling rubbish. I normally get headaches and feel sick which makes going to work hard but I try and do my best. The problem I have is that the treatment works great to clear my skin which is great but taking the tablets is a challenge in itself. I hate my psoriasis so I take the tablets that clears my skin but leaves me feeling ill!!

I am currently looking at maybe trying a private route to see if it is possible to try UVB again but at a time that would be suitable for my job as I truely feel I have to try a good routine and make sure my psoriasis doesn’t take over my life like I can let it do at times. I have an appointment with my current dermatologist ( who’s great) on Monday and I am going to discuss with him looking at possible other options that may work as honestly is the best policy even if you dread the answers you may get.

I have really struggled over that last couple of weeks psoriasis and I’ve had so much support over twitter. It’s hard to describe how I feel at times, I tend to question an awful lot but I know that I have to keep working hard to challenge my psoriasis and making sure that people are aware of the impacts psoriasis can have upon someones life.

Making decisions around things such as jobs, whether you have children, other illnesses etc can really make it difficult to combine everything but you have to make sense of what is most important, for me I know if I don’t treat my skin there comes a time when I stop functioning and I become feeling low therefore the most important thing is to find a treatment that doesn’t affect my job, luckily for me I have a great boss who’s very understanding which makes life much easier.

I would love to hear about anyone elses experiences of psoriasis and work, you can leave a comment on here or email jessicaandpsoriasis@hotmail.co.uk

Until next time Jess xxx

Merry Christmas!

I just wanted to thank everyone for an incredible year, I have had so much support and kindness over the last year.!

I have been working very hard behind scenes this year with Psoriasis which means at times my blog has been on the back foot however I have a few things on the agenda for next year that will hopefully push for good things to come for Psoriasis Paitents!

Thank you for sticking with me, I wanted to wish you a wonderful Christmas and Happy New Year.. Long live the laugher, love and memories!

See you in 2014.

Jess xx

Alex’s Story..

I recieved this lovely email and Justeen who sent it me said I could use this on my blog.. Things like this are the reason I love writing my blog and meeting brave people just like her son Alex.

I’m 45 and had psoriasis for 40years, currently clear after another bout of phototherapy but writing to you re my 10yr old very brave son. He started with it 6mths ago and so bad that when I’ve taken him see the consultant this week then they started treatment same day, wanted do patch tests but wasn’t enough clear skin on his body to do it and he was becoming ulcerated and skin was beginning to breakdown and become very pustular x so they wanted admit him..but he’s had so many admissions due to his asthma all his life he got very upset and decided it would be counter productive x so we have agreed that if we attend daily hospital appointments now ..at the moment indefinatley x plus a drug to supress his immune system, which with his asthma is in its self a risk also x got long slog ahead as I’m a single mum trying juggle this and work .. and childcare etc for his sis and also difficult challenges ahead for a 10yr old..high school next yr and a difficult time with kids at that age x also even negative comments from teachers who should know better x but he’s being very brave, staff as hospital have been brilliant with him and hence and we are keeping postive re a good outcome like mum x x so fingers crossed x …thankyou for listening to our story x x justeen x alex’s mum x x

They are starting him on ciclosporan x he’s very pustular and has ulcers in his groin x fairly disabling to be honest x and its just that his asthma is viral so if he gets a cold etc he usually ends up on a nebuliser and once in resus x hence the worry x they usually do the phototherapy 3times a week but have taken extra staff on to do daily session x he’s very brave tho and a proper cheeky chappy x so we just have keep positive x

This story made my day, Alex is such a strong and positive little boy just like the other children I have shared that are living with psoriasis.

My child has psoriasis..

Today I would like to introduce Karen and her son Callum, they are currently both working extremely hard for people to gain a better understanding of psoriasis! They are both no newbie to media world either after appearing on the Food Hospital TV show a few years ago.

Here is their story…

Psoriasis-It’s a Family Affair!!??

In my family Psoriasis is a family friend or enemy depending on how you look at it. I have it, my mum has it, my dad has it, my Grandfather had it and so does my son-4th generation!! However my son wasn’t born with it and I had this naïve notion that none of my children would get it so it was still upsetting when he did. Even more so when he got it worse than I ever did at that age.

Watching people pull their kids away from your gorgeous child because they think they will catch it. As I pointed out to one nasty woman the Psoriasis wasn’t catching but her ignorance and stupidity was!! After copious amount of creams it was time to move to UVB but that had difficulties. How do you keep a 3 year old in a UVB box? We managed with rhyme time and counting sheep. It didn’t work so off to discuss Methotrexate and Acertretin. How do I consider long term consequences of what could happen to a 4 year old, how do I explain to him about blood tests. As a parent when your child’s veins collapse due to continual blood removal it tears you apart. However it worked so it was worth all the heart ache and pain.

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Unfortunately Tonsillitis made it reoccur and it was back to medication and our starring role on TV’s The Food Hospital. Within 12 weeks a special diet and omega 3 fish oils we are clear again!! Then he became ill again and it returned (anyone notice a pattern!!!!!) damn you tonsils. This time progress is made they are to be removed in conjunction with MORE medication. Within 12 weeks Acertretin works it magic and for me the day of removal arrives. Operation and recovery goes without a hitch and that’s where we are now……WAITING……………………….. No more tonsils so hopefully no more tonsillitis so no more Strep Infections so no more Guttate???? Here’s hoping.

So a family affair and a family curse. I hate myself for giving it to him, but it not my fault. Callum doesn’t hate me anymore than I hate my parents for it. As an aside if I had a magic wand I would wave it and take it away but I pray my daughter doesn’t get it. The thought of her going through those bitchy, nasty teenage girly years fills me with dread. I’m hoping Callum won’t experience that because boys are not that obsessed with looks. I was once banned from a swimming pool on a French exchange trip and after hitting that low I decided I would NEVER be a victim again. I have taught Callum that there is nothing wrong with him and if people are not okay with his psoriasis it is THEIR problem and THEIR issue not his. Live your life, wear what you want and do what you want. If people stare, ask them for a picture!!

MANTRA- No-one is perfect, I just happen to know what my imperfection is!!

Happy Psoriasis Day

Love Karen and Callum

xx

You can also view their story here – http://www.thisissurreytoday.co.uk/West-Horsley-sufferer-calls-better-understanding/story-20010605-detail/story.html#axzz2jnbDOIHg

or to watch the Food Hospital show click here – http://www.youtube.com/watch?v=Ds8bGG8WIQE

Parents with children who have psoriasis.

Today we meet Vicky .. this is her version of events..

My daughter was 7 when I first noticed a little dry patch of skin on her head, just an inch or so past the hairline at the front, it was circular and dry. I just though it was a dry patch and treated it with moisturiser. Then she got another one, it was the size of a 50p piece on the side of her head it was read and scaley and a bit itchy. After an internet search, I though it might be Psoriasis (now referred to as P) and took her to the doctors. We had some steroid cream, which didn’t work, and it progressively became thicker and more scaley, they tested for ringworm, but it wasn’t. I was given steroid cream and asked to try that. That was just the beginning.
Over the next 4 years, the patches grew and grew until about 75% of  her head has P. Non of the steroid creams worked, no shampoos, nothing. we tried allsorts, chinese medicine ( a £35 consultation and a bag of dried herbs to infuse) this was so unpalatable to a child we never went back. Herbal tablets from ebay, which only made her feel sick. baby oil, olive oil, conditioner neat. Anything to loosen the crust of a skin which covered her head. We found the doctors not very helpful, it’s a very emotional thing for a parent to cope with, not only did I see her confidence diminish but my beautiful girl has something not so beautiful and I was helpless in helping her. She never allowed her friends to touch her hair or do ponytails as they do to each other at that age. In year 6 she went on a week trip to an outward bound center. I had to tell the teacher about her condition, which my daughter found acutely embarrassing, and teacher had to treat this for her whilst away. The thing which upset my daughter the most was the fact that the teacher wore latex gloves to do this. Of course this I understood, but she didn’t and took it as a personal slight. She felt contagious. She had to be excused from swimming as it drove her mad the itching, of course all the girls wanted to know why, and all the boys assumed she was on her period, she hated it.
About the time she moved to secondary school, I changed her doctors surgery as I became aware that she needed someone with an interest in skin. We found a much more understanding doctor, who understood that the ointments used to clear the scales were thick as peanut butter and very impractical, but, a necessary evil. I needed that, someone who understood the emotional side of seeing my daughter cope with this on a daily basis.
We saw a specialist, who confirmed P, one look at her fingernails all pitted did the trick. She explained that we needed a 2 week intense treatment of Cocois to remove the plaque before we could even consider actually treating the P. As it was the 6 week summer holidays we set to. She was very good, and had the treatment every night, parting hair into sections, applying cocois,sleeping over night, gently lifting it off each morning before attempting to wash it off. Each morning was like I had crumbled up a couple of digestive biscuits and combed them from her hair. You can never really get this cocois out with 1,2, or even 3 washes. It was a thoroughly miserable fortnight.. However, it did remove most plaque and we were able to begin treating the P. Her hair cleared within 3 weeks. It was like a miracle to me, I just wanted to kiss the new parts that weren’t covered in thick crust. I kept asking her if it felt better, she said she didn’t notice. When she went back to school it started to come back in patches, the same treatment did nothing, the patches grew and joined, it spread to her ears and bits began on her trunk. The doctor was good, she tried lots of things, we have exhausted them all now. She cried one night and told me she didn’t know how to cope not having the P, she was so used to it being their and she sat most nights picking it from her hair line. I understood, she probably couldn’t remember not having it.
Slowly it all came back, and her back and front are covered in small patches now, with an appearance of small pox. When you hug her you can feel it through her clothes. She is 16 now, and at collage. She has a small group of friends who know she has it, I suspect most can see it but don’t say anything, her parting is yellow and crusty. We treat once a week, with cocois and her steroid gel, which I mix together. It helps a little. In an ideal world, I’d treat 2 or 3 times a week. But it’s not practical to comb and wash that out before collage. Besides it’s sore and burns. At its best it’s bad, and at its worst it is like a thick painted crust all over her scalp, so hard you can’t shift it. As the skin continues to grow, it clings to the hair shaft and grows with it, creating hard scales clinging to the hair, you cannot brush them out as they are solid, you have to pinch them with your finger and thumb and pull them off toward the end of the hair.
She is much more at ease with it now, she tells me she doesn’t care if anyone sees it. She even wore a vest this summer, that was progress. She will have to live with this unless a miracle cure comes along, I have heard of symptoms getting better in pregnancy, but who knows. I love her dearly, I worry about the future for her, will someone love her with this, how will she deal with it when she leaves home. I have had many sleepless nights of worry. I think I too am slowly coming to terms with it as she grows up herself. It is not easy having it I’m sure of that, but I also know it’s not easy seeing someone you love with it either.we were always honest with her. Told her P was just skin that grew really fast. She found it acutely embarrassing. Never told her friends, panicked if they saw bits in her hair. She told them it was bits of leaves blown from trees. Once she heard some boys whispering about her, they called her…lizard skin…she broke her heart. Now if anyone asks about her skin she tells them she has a skin condition. X