psoriasis.Also take a look at general information about psoriasis
I have psoriasis in a rather extended way since the beginning of the 90's. By then, it wasn't so bad, but in 1994 the psoriasis became worse. As I was only a starter, I didn't know so much about the disease and all the ointments which were said to be helpful to "cure" psoriasis. Now I know that I will suffer from it all the rest of my life.
In 1995 I learned about the Psoriasis
Day Treatment Clinic in Ede (the link is to a Dutch page). This is one out
of three Day Treatment Clinics which are supported by my insurance company.
I have been there for 2x30 treatments and the results are very good. It was
the time I heard for the first time about the WorkGroup
for Young People, which is a group of young people who organize special
events for people from 18 to 35 years, suffering from
psoriasis.
While working, it was very difficult for me to ask my superior whether I could take three afternoons every week, for 10 weeks free, so I could go for the treatment in Ede. That's why I started to search for treatment myself.
I found out about Skin-Cap on one of the activities from the WGYP. This worked very good and the spots disappeared very fast. But, unfortunately, Skin-Cap was soon prohibited for selling because of insufficient documentation of the ingredients. Later on, Skin-Cap was sold again in a new combination, but the working was almost zero. I think it's still very unlucky that the old Skin-Cap is prohibited. I know, it's dangerous to use it often, but it worked so fine, that you don't had to use it often. You can't stop immediately with the Skin-Cap treatment, but you have to go down on treatment first.
I have tried many other ointments, sprays etc. but the right treatment I have never found. Most of the time it appears to be very greasy ointments with all kinds of impressive names which are meant to loose the psoriasis skin, but don't treat the skin itself.
In 2000 the psoriasis became very worse and I decided that the
only thing that could help me was the Day Treatment Clinic in Ede. I asked my
superior, and he was very easy on this. My health is more important than my
work he said, and I'm very grateful for that point of view.
In Ede I became almost totally "clean". After this, I need to use
some ointments to treat the damaged skin, Daivonex, and if the psoriasis comes
back, I need to use Diprosone For my head I still use Topicorte. Both the Diprosone
and the Topicorte are cortico-steroids, but in a not-damaging amount.
In 2001 the psoriasis came back worse than before (about 80%).
I again went to the Day Treatment Clinic, with very little result this time.
I kept on using the mentioned ointments in combination with fumaric acid tablets.
Together with the ointments the psoriasis almost disappeared in one month! Now
I only use the ointments if necessary, but I'm still using 4 tablets a day of
fumaric acid, and this works fine for me.
I hear that more people are using fumaric acid and have lots of problems. I
like to point out that it's a rather strict medicin. You increase the medication
from 1 tablet 30mg a day to 3 tablets 30mg a day, and then go on with 1 tablet
120mg up to a max of 6 tablets a day, in comparison with weight and buitl, and,
naturally, the severeness of the psoriasis.
When I'm covered with psoriasis, I won't hide it. I still use a T-shirt and wear shorts. I've got psoriasis and I'm not to blame. It isn't infectious, so why hiding it? The people around me know about the disease. While shopping, I sometimes see people look at me. If they start to talk to me about it, I'm willing to tell about what they see. But if they are rejecting to what they see, I don't want to meet these people anyway, so why bother? These people can go to.......<censored>.....
If the psoriasis becomes worse, you won't find me dressed in a
black shirt. The skin on my head drops and it looks like very heavy dandruff.
This is also the reason why I never buy myself a black couch. The dust-cleaner
is never far away.
When I visit people, I've never been before and I see that they have black carpet
or black furnish, I always apologize for leaving parts of me behind. They never
made a problem out of it.
For me, I would like that everyone would be so open about psoriasis
as I am. If everyone shows their skin, it would become very known, and no one
should have problems by seeing the damaged skin.
I know that many people have problems by showing the skin and I don't want to
press anybody, but if many people should show the skin, it wasn't so odd to
others anymore.
If you want to know more, or just tell me your story, feel free to mail me:
f.otter@nomaps.tiscali.nl(leave nomaps away from my e-mail)
From 1998 to 2004 I was a member of the WGYP, which is a part of the PVN
(Psoriasis Foundation in the Netherlands) In this group I tried to find young
people who want to share their experiences with psoriasis and do fun activities.
Now I'm over 35 and too old to participate.
Every year the WGYP has a Day for the Youth. On this day we do
an activity together like sports, self-defense or paintball. On those days you
can talk about psoriasis all day (and scratch as well!), and you're surrounded
with people with the same, or other problems, and maybe even solutions. Don't
think that we're a buch of self-pity people. We are not! Fun is the most important
and if you don't want to talk about psoriasis, you don't have to.
Once a year the WGYP organizes a whole weekend. Such a weekend starts at Friday
night. On Saturday we invite a speaker to talk about something which has a (slight)
connection to psoriasis, we do something together and in the evening we go out
to pubs and bars. On Sunday we go to a Swimming pool. For many people, swimming
is the ultimate fear, as everyone can see you! That's why we all go together.
We first inform the swimmingpool about our plans to come, as some swimmingpools
abhor people with psoriasis in their pool.
2003 was my last year: now I'm too old. I'll miss the group.
I like those weekends very much and I'd like to know whether other countries have the same kind of organizations for young people with psoriasis as well.
You can always mail me:
f.otter@nomaps.tiscali.nl (leave nomaps away from my e-mail)
Day for the 15-35 yrs old 2003, bowling in Utrecht