Psoriasis not the Black Death (My Experience of Psoriasis)

Member Name: Scooobydooo

Product:	My Experience of Psoriasis
Date:	30/01/04 (299 review reads)
Rating:

Advantages: none

Disadvantages: itchy, uncomfortable, cracking painful skin

It really astounds me how people can be so insensitive when it comes to a common ailment such as psoriasis.

Here I will write and tell you about My hubby and his condition. First of all let me tell you first and foremost psoriasis is not catching, by kissing someone, over night you will not go all red and scaly. The ignorance of people really cheese me off and after reading this opinion you will see why.

Throughout this opinion I will incorporate it with my own personal experiences and also medical details.

What is Psoriasis?
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Psoriasis is a very itchy condition and gets highly inflamed. It can appear in several forms which I will tell you about later. There is no cure for it and some people might have a spot or two, whilst other resemble the Singing Detective. There are things ongoing to find a cure and there are things that can help it and some do the trick for some and others like my hubby have given up hope.

A normal persons white cells produce every 3 to 4 weeks and sheds their own skin. A person who has Psoriasis tends to do this every two to three days, so what this means is live living cells are coming to the top all the time coming into contact with dead cells. You shed your skin a bit quicker, well actually 7 times more quicker than a person with out it.

People can get this this at different times of their life and it is predominant in the age range of 16-22, which is when Gary got it and also people between the ages of 50-60.

It tends to run in families, but even if you are surprised that your child has already comes out in silvery patches or scaly bits and no one else has come out in it, all this means is that someone might carry the genes and it has just not shown its form.

The Types of Psoriasis
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There are two main types of Psoriasis and these can be split down even further and I will go into more details about th
e ones that affect our lives.

1) Psoriasis Pustulosa which shows its forms as small pussy spots. I had these as a child but grew out of it at the age of 18 and touch wood it has not come back. These normally affect the front of the legs, which made my life hell at school as I would be the one wearing long socks in summer.

2) Guttate Psoriasis which normally shows itself as individual spots and can be after you have been poorly with a throat infection. A lot of time this will clear itself up when your body fights the infection.

3) Scalp Psoriasis - This is awful and uncomfortable especially if you work and it gives people you have dandruff. There are treatments for it but it is quite embarrassing.

4) Plaque Psoriasis which is where large sections of your body is covered in this, rather like the 80s Singing Detective. A Plaque is considered were there is a group of Psoriasis all together, some people do get small patches, but serious cases like my husband are are literally all lover his body and some are around 1ft x 3ft in size. This is what Gary suffers from.

After all this to make it complete there is a condition called Erythroderma which is quite dangerous and if your doctor suspects you of having it you will be hospitalised straight away. It is when your body goes red hot and dry and nothing will help you calm it down.

Right so after this, 6% of the population get Psoriasis and out of that less than 1% will get Chronic Psoriasis and out of that less than 20% will get Psoriatic Arthritis which is derived from Psoriasis which unfortunately Gary has got and this affects backs, fingers and toes.

How do you know which sort you have and how do you know if you have got Psoriatic Arthritis. Well go to your doctors as soon as you can and let him diagnose you. Gary did this and was sent to the hospital to see a dermatologists and he had blood test and it confirmed that he has Psoriatic Arthritis.

When
Gary was 22 he was in the forces and he started for no reason coming out in spots. After a while he questioned it as it seemed to be spreading and not really going away so he went to the doctors who told him he had Psoriasis. At this point, it was not much of a problem and he gave him creams and so on.

As the years went by all the creams, (which I will tell you about later) failed to work and about 10 years ago he became a Plaque Psoriasis. This means that large parts of his body is covered in Psoriasis. This means his skin cracks and he has large flakes, rather like the size of cornflakes, his skin is always red and we have to keep it moisturised as much as possible. He goes into a hospital every so often and this takes him a month and they shift it and then he comes back out into the big wide world and out it comes again.

Now Gary has it in his hair, near his ears, all down his arms and legs, front and back, a bit on his private parts and his tummy and his back. We have tried everything you can think of but treatments for this is expensive and even the doctors moaned at how much of their budget we were using on creams he so desperately needed. In total in prescriptions we can spend around £200 a month on treatment which is not always possible so he suffers. We are not eligible for any help so we get a pre paid prescription certificate.

His skin flakes off and this is really embarrassing for him, not me as I love each and every flake as this is a part of him. He wakes up in a morning and there are millions of flakes left in the bed as his skin has been shedding at night and throughout the day we are constantly hoovering up everywhere as he sheds. He got so sensitive about this but now we just joke about it and when he has a bad day, I say to him you have left the other half of yourself in the bed. That way we keep it simple and it is not a problem. Laughter is the best form of medicine. He has to have a bath at least twice a day and app
ly cream 4 times a day to keep his skin soft.

He is attending University at the moment and is doing really really well but he gets really embarrassed when he is there and is sitting down working and when he gets up there is a gentle snow fall of flakes. We got around this by buying him a pair of long johns which are body fitted and keeps the flakes in so he can sort himself out when he gets home.

His skin dries up very very quickly and I have seen him bleeding and in agony sometimes when we have run out of ointment or treatment of one thing or another or the chemist cannot restock fast enough for us and we normally buy things in bulk.

We tend to have wooden flooring at home so this means if he is flaking bad, we can just sweep it up very quickly.

Now the next section is a bit personal but I want to give you a true extent of how it affects our lives. When we get up to bedroom activities he gets really and embarrassed and says are you sure, how can you love me with all this and my red skin. The fact is I love him and he is so divine and loving that when we are making love, I do not see his skin, I see Gary. It really does not bother me one bit and no matter what I say to him he is not always convinced.

Now as a result of having Chronic Psoriasis, he also has Psoriatic Arthritis which affects his joints, especially his fingers and toes and his back.

After all I admire my husband through this disabilities disease he is coming tops at his University and in his final year and he is hoping to start his business up in July.

Yes there are treatments and I will tell you about a few, but before I do this, Please if you think your a sufferer from it, do not go and buy anything. Go and see your doctor first.

Aqueous Cream - Soft white paraffin based cream that keeps his skin soft. £1.99 a jar.

Dithranol - This was a yellow based cream that he used about 5 years ago which stained everything a horr
ible colour yellow and ruined a settee. After moaning to the doctor he said he forgot to tell us it stains everything in site.

Dovenex - Another waste of time. It cleared some of it only to reappear in other areas with avengance. We stopped using this.

SSC Salcap - A paraffin and coal tar that is applied to the hair and does work. We only use this if he is housebound as your hair looks like a chip pan and grease is an understatement.

Gold Injections - Deposits of gold put into the blood stream - Again another failure that did not work for him.

Vitamin B injections - Straight into the bloodstream and did not work.

Exorex - This coal tar based lotion can be bought over the counter and cost £23 a bottle and we used 5/6 bottles a week, it does work but soon as you stop it returns. This does not stain and is yellow in colour.

Body Shop - A few years ago they did a cream and people found the banana cream great for psoriasis and it shifted small bits, unfortunately they discontinued it.

PUVA - special rays of light at high power, like a sunbed, you walk into it for around 2 seconds and do this 2/3 times a week, you get a lovely sun tan but this ties you down to the hospital where it has to be very carefully monitored.

We have tried Alphrosyl shampoo which he uses at the moment and keep his scalp at bay with it but he has to wash his hair everyday with it because it makes it really greasy within a day or two.

We have used things like E45 emollients and the like, infact we have used most things and the reality of it all is we have to live with it. One day there might be a cure.

What I must stress to you now is just because some products have not worked for Mr Bubbles it does not mean to say it will not work for you.

I swear by diet for Psoriasis as when I cut out Dairy products mine just vanished but I did not have it as bad as Gary. We also find that when he eats plenty of gre
ens and stays off alcohol it seems to get better. This week he has stayed off dairy products and you can see a marked improvement. We have just started to see a chinese herbalist and had a session but like most things they wanted £90 a week to treat him which we cannot afford. I have also cut out dairy products which I am a great beliver in that affects it whilst not cures it and in the last 4 weeks his violent red plaques have gone to a pink colour which is great.

It also affects our lives in other ways as he wil not go abroad where it is warm incase people mock him. He will not swim or go in the sea, well actually once we went to Wales and it poured down and everyone left the beach, I said come on just for me, we went swimming and were like two little love birds in the sea.... Brilliant that was. He always wears long shirts and will not wear shorts. He is a prisoner of his disability, but now we have moved we have got 6ft fences around us and we are having more done so that he can go outside in the garden without people going ewwww whats he got, the dreaded lurgy!

Oh well there it is, the truth about it, but next time you see someone who is chronic instead of going ewwwww, just think how this must affect them and show them some consideration, after all he is human and my husband and I love him to bits.

Karen

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