World Psoriasis Day

[michellem]

 

Dear friends. Today, is World Psoriasis Day, a day that focuses on educating the masses about what psoriasis are and how it is to live with.

 

Most of you should know by now, I have psorasis. I have "normal" plaque psorasis in spots here and there, mainly my legs and my scalp, and a severly painful pustular psorasis on my hands and feet, wich means that I get (sterile, non-infectious) pus-filled blisters on top of the dry, flaky skin. It's painful, it's messy, it's time-consuming. But it is NOT contagious. I've been stared at, I've had customers refuse to touch me, I've walked down the street and see people point at my skin make disgusted faces. I have on purpose covered up my skin on warm days, so that I won't have to be stared at. This is my disease; you won't get it from accepting money from me at the store, or sitting next to me on the bus, holding my hand or giving me a hug. I am not my disease. And I am not contagious.

 

I find it appalling how people think they can treat me, and others with psorasis, just because we have a skin disease. I'm a member of a group on Facebook, and the stories other tell are heartbreaking. A mother with a child, where children in her kindergarden was told to not play with the child by the people working there. A teenage boy who's classmates refused to share a locker room with him. A young woman who got dumped by her boyfriend the first time he saw her naked. Parents who's "politley" told they're not needed to help with baking cake for school celebrations. People who say "eww" when they see someone with psorasis on the street. People get bullied, for having a skin disease! I know it doesn't look pretty; trust me I know, I've had plenty of people tell me. But that doesn't make it ok for people to be rude to those suffering from psorasis, and it certainly doesn't make it ok to treat us like we have some highly contagious, deadly disease.

 

Please, help remove these false beliefs around psorasis and eczema by spreading this knowledge! Thank you :)

 

 

[Sherper]

Before you posted this, I had no idea of the condition of this disease and I'll be the first one to say I would've frowned at the sight of a victim to this disease (even though it may not have been their fault).

 

Yet what you are saying about people bullying victims of plaque psorasis is just disgraceful in my opinion. People make hot headed judgements due to ignorance, and to alienate someone from a group before knowing more about the nature of their condition is just simply unforgivable.

 

Thank you for sharing this with us, and take comfort in knowing you've helped at least one other person understand the nature of this disease. I'd give you a hug if you wish :) But it'll just have to be an internet hug for now.

*hugs*

 

Take care!

[michellem]

I'm happy to hear that Sherper! Yes I know alot comes from people simply not knowing what it is. That's what I think is great about awareness days :)

 

*hugs back*

[kukasö]

Well, you can understand people in the street or customers. They have no idea if it's psorasis and it's contagious.

 

But in schools and such when you can find out what it is such behavior is really strange.

Spreading information about it is the best way to change that

 

I have some unknown skin anomaly myself and always wait for people to react on it.

[Aidanna]

*hugs* Mish - I totally understand how hard something like this can be - when I get a celiac immune response, I get skin reactions too. I hate how people comment or look at you funny, or try to tell you how to fix it. You are an amazing and beautiful person. I think it's amazing how passionate you are about building awareness! 

[michellem]

Kuka, people wouldn't be allowed to work in a store or go around if they were contagious... They'd be in a hospital.

[Ryrin]

I'm glad you posted about this Mish.  Getting info out is good.

[_CLOUD]

I will spread the word

 

*hugs his souvra sister*

[nicana]

*hugs her Mishisis*

 

Kuka, people wouldn't be allowed to work in a store or go around if they were contagious... They'd be in a hospital.

This was my first thought after reading your OP. Personally I couldn't treat someone badly due to a skin disorder or any other visible disorder badly. It makes me mad when I see people do. I more than likely will say something to them. (It wouldn't be very nice either.) I may look on you with sympathy because I can only imagine the pain you are going through but that would be it.

[michellem]

You don't have to go lecturing people, lol, but if you hear someone you know speaking in ignorance, myself and all over PSO'ers all over the world will be very grateful if you politly correct them!

 

*hugs Nica and Cloud back*

[Nynaeve]

I think it's great you posted about it. I have psoriasis too so I can relate. Though mine is currently confined to my scalp so aside from scratching my head a lot and having dandruff, it's not that visible. It used to be less of an issue before but since it's connected to stress it has really been breaking out in the last year or so due to RL.... I was always afraid of it spreading...  :/

 

 

 

 

Nyn

[michellem]

What kind of shampoo/conditioner do you use Nyn? My scalp got soo much better after I switched to natural products; the ones I use now are a Danish brand called Urtekram, they sell it at amazon, the sulphates in the shampoo is from natural origins and it's so mild for the hair. And it'll probably be good for your curls too, since normal sulphates are very drying and tends to make curls frizzy and dry.

[Aidanna]

I also switched to an all natural one called Desert Essence Organics - I get it from my local health food shop, but you can get it online too - it might be more expensive where you are though.

[JenniferL]

My husband has this too. Exercise and sunlight help him. 

[Nynaeve]

I use regular shampoo and conditioner. At one point I used some against dandruff too but it didn't really help. I don't really have money to order it online but I'll see if such a thing is available in stores around here.

 

 

 

Nyn

[michellem]

Urtekram are actually pretty cheap; about 4-5 british pounds pr bottle. I have tried the Aloe Vera and the Brown Sugar ones, both are great, the aloe one is a bit heavier so I gotta wash my hair every third day instead of every fourth, lol, but I love the smell, natural and citrusy.

Here they are on british amazon: http://www.amazon.co.uk/s?ie=UTF8&field-keywords=Urtekram&index=drugstore&search-type=ss (I've at least gotten the impression you are in Europe?)

 

Another brand I've heard great things about, but have yet to try, is Aubrey Organics.

 

 

Jennifer: Yeah sunlight is good. I can't exercise unfortunatley since I have this damn stuff on the soles of my feet, so I can hardly walk. I do try to exercise a little when i have good days though.

[Nynaeve]

I'm Israeli.

 

And I can't be in the sun. I burn! But they do claim that it's good to spend time in the dead sea.... which isn't too far from my hometown. I also heard from doctors that they can do some sort of.... radiation therapy. But I've yet to explore that option.

 

 

 

 

Nyn

[Ryrin]

The Dead Sea is like warm bath water.  I like the Red Sea better.

[Nynaeve]

My home town is in Eilat and I can see the Red Sea from my parents' window. But to be honest I can prolly count with my two hands the number of times I went to the beach. Being a pale red head, hanging at the beach isn't really fun >.>

 

 

 

 

Nyn

[Ryrin]

My home town is in Eilat and I can see the Red Sea from my parents' window. But to be honest I can prolly count with my two hands the number of times I went to the beach. Being a pale red head, hanging at the beach isn't really fun >.>

 

 

 

 

Nyn

 

 

I love Eilat.  My favorite place aside from Jerusalem.  I spent all day and all evening on that beach.  I am dark so not much problem with sunburn if I use a little sun screen.

 

I'm coming back, Nyn.     Probably the summer after next.

 

 

 

Dead Sea Research.

 

http://www.deadsea-health.org/

 

"The Dead Sea area, famous for its health promoting environment for thousands of years, contains an unique solar irradiation, an increased oxygen density, a high density salty sea with an unusual salt composition, thermo-mineral springs and a special natural mud. The effects of these unique properties are presently being critically evaluated in terms of types of diseases treated, modes of therapy, and mechanism of healing." 

 

 

http://www.deadseaguide.com/Psoriasis

 

"Countless studies have shown that rare combination of natural forces in the Dead Sea create unusual conditions for natural healing of skin diseases. In the middle of the last century the Dead Sea became a focus of top doctors and professionals because of its unique healing abilities. The ability to heal is not only because of the minerals found in the Dead Sea but also to do with the sun and relaxed resort atmosphere." 

[michellem]

Yeah theere's both UV light therapy, and radiation waves therapy, I've tried both, none worked for me unfortunatley, but I'm a special case, lol.

 

Do you burn ever with sunscreen on? That really sucks! I go spf50 all summer, lol.

[JenniferL]

Yeah, the UV therapy helped Jimmy. But you can do the same thing for free by going outside. We've tried Dead Sea salt scrubs, but they didn't do anything. 

 

Weirdly, the statin he's taking for high cholesterol has a side effect of reducing psoriasis symptoms. 

[michellem]

That's a nice side effect!

 

I've been trying to cut my methotrexate for a few weeks now, it's a super harsh medicine (it's chemo, just smaller doses than cancer patients take), I have been on it for almost two years and it's never seemed like it does much good, and I'm loosing so much hair and have some other unpleasant sideeffects. It's been three weeks since I've taken it and I haven't noticed that I'm getting worse so far... I'd be very happy if I could quit it. There's no use in taking a super strong medicine if it doesn't do anything to help me.

[Ryrin]

My mother took it for cancer. Didn't do much good there either. It would be great if you could get off it.

[Kwom Masbag]

I happen to have Psoriasis as well.  I couldn't help but recoil and go "Light, what an icky day.  Whose idea was this?"

Though I guess that really goes against the spirit of this thread, so...how about some anecdotes?

 

I've got the stuff all over my body, like, all over.  Luckily none on the soles of my feet, and it's tended to keep itself confined to areas that can be covered up with clothing or hair.  Unfortunately, it's spread onto my forearm and I've caught sight of some on my face, beneath my right eye.  They say sunlight's good for it, but I live in the desert and have a rather fair complexion, so that's not happening (on top of the sight that I'm not getting caught without my clothes on where anybody can see.)

I've had the stuff since I was two, which makes about eighteen years now.  I've gotten used to it, since I haven't really known any other way, but I still can't help but getting quiet and drawing my lips into a line whenever anybody at my store asks "What did you do to your arm?"  At least it's kinda in the shape of a smiley face...I guess?  Heh.

 

I used to take methotrexate too back in middle school (they put me on folic acid supplements while I was on it) but I didn't like how it made me feel nauseous after I took it so I just kinda...stopped.