31 Jul 08:40
Healthcare system, friends & family, strangers
What needs to be done to increase awareness of psoriasis in society?
Please don't include specific medical product brand names or external links.
31 Jul 08:51
Alot, lol..... i think because its such a common and can be very traumatic to have, i think we need sore education on it as children and perhaps that would give them some understanding and awareness in the public eye that would bring more acceptances , there is just to much that could be done
31 Jul 09:08
Hi Flaym. First of all there needs to be communication. Without it, nobody will have an interest in listening to us. Yes, we talk to our family and friends about it but that is basically where it stays, apart from being on a support group like Flaym. There are no advertisements on television with regards to Psoriasis. Sometimes we will find an ad in a magazine but that is not enough. People need to understand the condition and know that it is not contagious. We should not only comment on the illness in a support group but on social media as well. People will listen and would want to find out more about the illness especially when they see pictures. Everyone looks at pictures and that will be a way for them to learn.
31 Jul 09:40
T shirts that say " I have psoriasis and you cannot catch it"! Don't think I'd be allowed to wear it to work though .
31 Jul 09:50
Don't you get a casual day like Friday at work Sue? I will wear a T shirt like that on Fridays or weekends. People might not ask but maybe there should be a picture of Psoriasis printed on it. Maybe of my ankles!?. I'm sure I will get a second look Lol.
31 Jul 10:07
I think more sharring,,experience and education.
31 Jul 10:41
Maybe get someone famous who has P to speak up and be a spokesperson for P?
31 Jul 10:49
Please...just not Kim Kardashian.
31 Jul 11:06
I think Cyndi Lauper speaks about it?
31 Jul 11:11
Oh I love Cyndi.
31 Jul 11:19
Put some people with P on town square and that's it.
For extra mile show some of that big ass Kardashian crap on big screen - free ass :)
They notice us, belive me :)
31 Jul 11:22
Haha Michelle,I work in pple houses ,no way can wear our own causal gear,would be good though,maybe a protest group would get recognized, to the world , we have p don't put us in a cupboard,we can't help it.
31 Jul 11:35
Oh yes sorry Sue you said so before. Well they can try put me in a cupboard. Excellent Slogan!
31 Jul 12:00
I don't know Flaym...All auto immune disorders need to be brought into the open. There are so many people who suffer in silence. Forever feeling exhausted and sick. Too many people who can't be cured. But if the world is made more aware of what these diseases are then there will be understanding and support. P is visible so that scares people off. The only time I've seen it on tv is on the doctors. And that was for only 2 minutes. And who watches that late at night?
31 Jul 12:34
Maybe Drs need more awareness most I've seen aren't as clued up as people on here seem to be
31 Jul 12:53
No defn not Kim K please Haha!! If feels like the number of people diagnosed with auto immune diseases are on the increase. We have to compete with many other illnesses and diseases. Maybe it should be a joint effort all together to bring awareness of the different types of auto immune diseases.
31 Jul 13:42
You know something I dislike the new commercial for a certain Medication that helps relieve The Big P..I actually feel it makes all P people look like victims we are not victims we have Psorasis nothing more ,nothing less and we cope daily,we don't feel sorry for ourselves we are people who have a wonderful story to tell and we are of value...that whole commercial thing angers me..I wish Medical and Nursing Schools covered Integumentary systems much better. I wish they'd include folks like us in those teaching Moments. I think we should not be afraid of how we appear to others and answer Honestly and let folks know what we have isn't contagious. What we have can't be cured,Its an Autoimmune disorder. WE need to seek any opportunity to share with others who Don't have The P.
31 Jul 13:46
Yes I love the T-shirt Idea..I want to give them away to my Dermatologists Office Staff :>)
31 Jul 14:00
That's perfectly said Lindakay. Hell no. We are not victims. We are survivors and that means more. Having Psoriasis makes us strong. There is a quote that reads " I am not a big fan of being a victim. I don't like getting beaten up" and this is what others should know about us. Loved it thank you.
Lol - Would love to see you giving the T's away to the Derm's staff.
31 Jul 14:34
I think people need pictures of psoriasis, information about it. And what it is like to live with it.
31 Jul 15:11
Lindakay I've never seen an ad about medication for p. Gosh my eyes would have popped out. Must be USA only?
31 Jul 15:36
Many people around the globe are looking at nutrition & eating habits to control a whole range of disorders. Maybe P sufferers could feature on this type of advertising...stating things that help like tumeric, coconut oil etc
31 Jul 17:42
SA the same Jane. Quiet as a mouse with regards to P amongst other things. That is a very good idea Carolyn. Maybe shoot our own ad and circulate it??
31 Jul 17:50
I think more education would be the first step.
31 Jul 19:10
I fully agree with Peter , especially in developing countries like South Africa . There are huge epidemics which compete for a mere small amount of attention in all areas like Tuberculosis and HIV , that sadly literally no public awareness takes place in schools, clinics or in the general health arena etc of disorders like P . So very very far to go to get normal people not staring at me in public and pointing , or having hair dressers asking me to leave a salon because of contaminating their equipment with a contagious disease !!
31 Jul 19:12
First thing is society needs to understand what it is, not look down on people with it as if it is a contagious disease. Money needs put into to a nationwide advertisement scheme broadcasting it out on TV. Prime times so as many people see it, also when I was younger thought of going round schools to advertise it. Yes the ignorance of people is too much at times, the looks ones get & words on the tip of your tongue. Be positive even in your worst days, keep your chin up.
31 Jul 19:42
Get Your Skin Out! Just that one thing. Let yourself be seen. Then others will do the same. And future generations won't need to hide away!
31 Jul 19:57
I agree Sarah but as yet I haven’t been brave enough to bare my legs but I’m working on it.
Education education education! That’s what needs to be done and it could start with educating doctors..... seem to know more than them!
01 Aug 01:35
Oh I can go on and on how I know more about P then My substitute doctor.
01 Aug 01:44
The squeaky wheel gets the oil 🛢 our voices can only be falling on deaf ears I guess it's not a problem unless it's your own drug companies only see profit not problems doctors treat only symptoms they need to treat a person personally and completely and not every three months they should get paid for results not per the minute...rant over..
01 Aug 08:00
I agree with everything that has been said. I could get a t shirt made - "I have the big P but I'm not contagious" (people might stop and ask what is the big P) but I don't like drawing attention to myself - I am very shy. I must also confess that I don't have a bad case of P - oh I can scratch until it bleeds believe me but it's confined to my legs and arms only. So I wear long pants all year round. If anybody comes up with good ideas for bringing this problem to the public eye count me in and I will try to help if I can.
01 Aug 13:53
I think the more we can talk about p, things will get better. We hide away with it so often, perhaps that is why it is only seen as a skin contition. I never used to talk about it or how it made me feel to anyone. I think bringing more awareness may start at home, with our loved ones. ❤
02 Aug 19:18
03 Aug 00:05
You gotta forget you have it to the outside world the parasites have never experienced what we have. I have never bother what other say nor their squinty eyes do. My wife once said at the old Butlins in Ayr when I was a lot younger to a few teenagers who thought they were smart in a gang. They were walking past and went ooooooohhh loook at him he is rotten his skin aaargh whilst haveing a good laugh. My wife grabbed one & said listen son, what my husband has can been cleared up, but see that face you got son, you gotta go thru live with that. You give people frights forever. So that is a starter never let it bother you, secondly I knew a nurse who used to rub banana skin on her arms to get rid of it & the itching. Don't let the B******s get you down.
03 Aug 09:26
We need to show it and talk about it. I didn't, for many years. I covered up and pretended it wasn't there. Better to be upfront and try to educate people.
03 Aug 09:30
Someone should write it into a TV series so people can become familiar with it - a character who has psoriasis and perhaps, psoriatic arthritis and how people deal with it and react to it.
03 Aug 11:29
Haha,Harry ,I tried bananas ,didn't work,that was a few years ago.G ood idea Denise a popular tele series would open eyes.
03 Aug 12:41
Wasn't there a song on the radio many years ago called " living next door to Alice " maybe we could rerun that as " living next door to psoriasis ? "
03 Aug 18:00
Hahaha Clive. Good one! And I'm singing the tune.
06 Aug 16:12
Well flaym, I talk to many of Clear skins,, Some are interested on what i have got to say on psoriasis, They are more aware that its not just a skin condition by what i tell them :),To them i am not a flaker as i hide it fairly well,:) Do i ever need to say anything regarding psoriasis,no but ,i am giving out awareness that clear skins will see psoriasis in a different way maybe?,Most people i talk to have someone in the family that has psoriasis or eczema so there is some interest in what i say to them :) I do my bit for the flakes :)
06 Aug 16:39
Yes you do John. I found that many people suffer from eczema, I wonder if it could be a soft family of P? If you know what I mean? I've never actually went into detail with eczema, but could they be related?
06 Aug 16:59
Hello Michelle, I think so, there are so many different forms of psoriasis etc , i think there is a link, I know the doctors surgery where i live , there was a leaflet on the shelf on display on Eczema,i did read what it had to say, strangely food triggers came up and you know, they were triggers the same as for P potentially like dairy, night shades, i have always thought that they are linked/ related thank you :)
06 Aug 20:55
I agree John. Additives ,sugar ,pesticides,dairy all triggers for the big P
09 Aug 00:07
I think that it's important for US to be the voice. If we hide, then there is no awareness. Bare it all and let the world see that we are strong and just people. Start with ourselves is what I mean. Not wait for anyone to do the task for us. We need to be comfortable in our skin, no matter what it looks like.
18 Aug 06:58
I’m not sure what the answer to this is, but there’s no much stigma regarding psoriasis in our society. I’ve seen pamphlets in various docs offices.
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