Interview With a Sufferer of Psoriasis

Q1. How old were you when you first developed Psoriasis?

12 years old, and it started on my scalp.

Q2. How did you notice this on your scalp, and did you know right away what it was?

My scalp was itchy and flaky and it used to bleed when I scratched it. My head felt irritated. No, I didnt know what it was. I went to the doctor who sent me to the skin specialist in Dublins Hume Street Skin and Cancer Hospital.

Q3. What sort of tests did you undertake?

I went in to see the nurse and she cut off a length of my hair on the back of my head. She was able to tell me straight away what it was.

Q4. Did you receive any relief?

Yes, she gave me Tar Pomade to rub in twice a day.

Q5.Did this work? How was it applied?

It did work, yes. It was applied by rubbing a fingertip amount into my scalp to cover the whole area twice a day. In the evenings the scales had to be lifted with a comb before the evening application.

Q6. How did you feel when you were diagnosed?

It didnt really bother me at first because it was on my head only. Nobody could see it. The only problem I had was how greasy it made the patch on my head so I was constantly washing my hair.

Q7. Did it affect you as you grew older?

Only that I started to get it on my elbows and knees and patches on my legs. This was when I was 14. By 16, my back was covered and my thighs were also covered. All small patches but full coverage. By 17 I was in Hume Streets Hospital as I was covered all over even on my forehead, forearms, buttocks and stomach.

Q8. How long did you stay in hospital?

6 weeks

Q9. What was the treatment?

1st I started off with Whites Tar Paste to cover my body and Tar Pomade for my head. Then after 4 weeks I got Dytrenol which was clearing it very well but it left purple marks wherever it was applied.

Q10. How was your emotional and mental state through all of this?

It wasnt too bad coz I got out on weekends. The nurses would have talks and wondered why I was never affected by it. It was good to be around people who suffered from it as I felt that I wasnt the only one and a lot of them had it worse than me.

Q11. Did it disappear?

It did for a good while.

Q12. How long?

Id say about a year.

Q13. Then what happened?

It started to come back as little spots or if I cut myself it appeared. Scratches and cuts and scraped would disappear and psoriasis would appear in the place they were.

Q14. Did you use creams from chemists at this time?

Yes, the doctor prescribed me Dovonex, it was a steroid based cream.

Q15. Anything else?

I used aqueous cream as well. The doctor prescribed Piroten (anti Histamines) to stop scratching at night and I also used E45 cream, but rarely, it was expensive.

Q16. And did that work?

The Aqueous cream cooled the itchy burning feeling, the tablets worked but made me very drowsy and I hated tablets so much I actually taped socks to my hands at night rather than take them.

Q17. Was that your only time in hospital?

No, I went twice more.

Q18. When?

When I was 20 in 2000 and when I was 24 in 2004.

Q19. How did you get on and did your treatment differ?

In 2000 I was using Whites Tar Paste and that cleared it up for a long time, approx 2 years. In 2004 I had a very bad run of it. They stopped using Whites Tar Paste and I began using 1% Tar. I cant remember the exact name of the Tar. For the 1st week in 2004 the 1% was working great, then they moved me onto 2% and it burned my skin. I spent the next 5 weeks in hospital getting burnt, having aqueous cream applied, getting burned, then aqueous cream and so on. Then they decided to try light treatment. I was released for this and had to go as an outpatient.

Q.20 Oh! What does Light Treatment involve?

I got a bath for 20 minutes in special stuff. The bath was readymade when I went in so Ive no idea what was in it. It made my skin more susceptible to the UV Rays. After the bath, Id go stand in a stand up special sun bed for 2 seconds.

Q21. 2 seconds?

Yes.

Q22. And then.?

They increased the time each time I was up there.

Q23. How?

I went from 2 seconds to 3 seconds, then jump to 5 seconds next visit. That could stay at 5 seconds for 2 weeks, then a jump to 30 seconds for a few visits. Then it was finally to 1 minute but it made no difference. I started to get big red lumps on my back. I just stopped going.

Q24. Do you regret giving up on the treatment?

I dont really. Hume Street was a great place but travelling from Cork to Dublin seemed an awful waste of money and time for 2 seconds under the light. Im originally from Wicklow so it wasnt so bad travelling from there when I lived there- it cost me 20 euros a week. From Cork it was 60 euro. Then I started working Full Time once I settled in Cork and I found it impossible to go then anyway.

Q25. Have you ever felt depressed with your condition?

Yeah, sometimes. Bouts.

Q26. How did you feel during these bouts?

I thought Why Me? but its not really a way to get an answer. During the winter when my skin cracked and hurt a lot sometimes Id cry with the pain. Putting aqueous cream on used to sting during cold weather and I felt deflated.

Q27. Has anyone ever hurt your feelings over your skin condition?

People who stare and comment, and say Ugggghhhh, whats that? Also my dad used to hoover constantly and gave out to me about flaking.

Q28. I presume that really hurt?

Yes, very much, coz hes my dad like.

Q29. Did you ever snap back?

No I dont think so, I was very quiet.

Q30. How do you feel about it all now?

Im not too bad now, but sometimes I feel self conscious.

Q31. In what way?

People stare, I hate it. They stare at my forehead where I have a patch of psoriasis, and I mean stare for a good bit. Also I was out one night and a colleague stared at my arms when I was moving them while speaking and I got to the point where I moved them rapidly on purpose to see if shed stop staring and check herself.

Q32. Would you return to hospital now?

I cant.The hospital closed down and Im not aware of anywhere else that does inpatients. There is another hospital in Dublin that does outpatients.

Q33. Do you think you should avail of some treatment?

No. Not hospital wise. I could get sessions on a sun bed, reduced time of course. Sun holidays as well, and if I rub moisturiser on it keeps my skin from getting too sore and flaring up.

Q34. Have you any tips for other sufferers?

Yes. Drink plenty of water and use vanilla cream. Get enough sleep. This tends to keep it at bay for me anyway but may help others. I cant say go on a special diet e.g.) no cheese or red meat because it never worked for me. I went to a herbal specialist- Chinese medicine- and he recommended doing this diet and he gave me animal fat for my scalp.

Q35. Did you use it?

Yes. For a while. It made my scalp more irritated and it flared up again.

Q36. Would you like to add anything?

Im used to it now all of it. If you dont have the condition, dont stare at people who do. Do try a few treatments e.g. Diet, herbal. It most likely is different for everyone. Dont let it get you down. 1 in 10 people have it so remember if you are in a room with 20 people you are not the only one with psoriasis.

Interview

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