Hello, I'm new here.

[RachelB]

Hello. I have just joined NPF. I have a 9yr. old daughter who has had psoriasis since birth, and hope to get some advice here on how to deal with things, particularly the emotional aspects of this disease.

Last summer was the first summer she didn't clear very much. Well intentionned adults have asked her if she has poisen ivy or just got over chicken pox. She has had questions like that for years, but recently it is bothering her a lot more.

How do kids, prticulary pre-teens and teens deal emotionally? How can I help her?

Karen, Rachel's mom.

[Carla]

Hi,

I first got psoriasis when I was 10 years old and it has been with me since then (I am now 21)so I will tell you what helped me.

My mother dealt with the psoriasis very well - she found out lots of information about it and made sure that we all knew exactly what it was which really settled my mind.

As I grew older some kids in school who did not know what the psoriasis was made some cruel remarks. I told my mum and she phoned the school to let them know and to ask them to raise awareness. My class teacher then told the whole class about psoriasis and that it was not contaigous etc.. (and that I had it) although this was quite embarrassing it helped the situation greatly. Once the other kids were informed they no longer made remarks as they knew what it was and I felt normal again.

People will ask questions! Help her to explain the disease to them in a way that they will understand. I found that when I just let people know what it was and answered their questions they no longer took any notice of it.

My confidence was affected - particularly when I was a teenager. It really helped just talking to my Mum about how I felt.

Even now when I am used to the disease and just accept it my Mum is always on the look out for new treatments and cutting out articles etc. It helps that she does this as I tend to just forget about it and probably would not notice these things on my own!

You are doing the right thing, keep up the good work!

Best Wishes,

Carla

[Carla]

Hi Karen,

I just remembered something else!

When the Doctor told me I had psoriasis (when I was only 10) I just thought - I've got WHAT??!!? I had never heard of it before and no one I knew had psoriasis or knew what it was. I felt like I was the only person in the world who had it!Make sure your daughter knows that there are millions of other people who have psoriasis!

Best Wishes,

Carla

[RachelB]

Hi Carla,

Thanks so much for your answers. You have survived the teen years, so my daughter can too!!! You sound like a strong young woman with a supportive mother.

We have just found this site, and Rachel has spent lots of time reading the youth message board. She has yet to get up the nerve to post a comment. I do think it is the first time that she has realized there are lots of other kids out there, some even worse off than her!

Letting the school know about it is a great idea, although I think Rachel would get very embarassed. I mentionned to her teacher that she goes to the hospital 3X/week for her photoherapy, and her teacher looked at me without any comprehension at all (and her teacher is great).

I do think that she notices it more than anyone else. Unless I am helping her with her creams I just see a beautiful girl, and don't notice spots or flakes. I suspect her good friends feel the same way.

Carla (or anyone else), have you found dealing with others gets easier as you get older?

Thanks for your encouragement.
Karen (Rachel's mom)

[Carla]

Hi Karen,

You're very welcome. It's great that you have introduced Rachel to this web site - I'm sure she will find a lot of reassurance from the other children. I didn't know any other children who had psoriasis when I was younger and I wish I had.

Dealing with others has become a lot easier.

I used to feel really embarrassed when people asked what it was but now I actually enjoy educating people about psoriasis because it means that next time they meet someone who has it they won't be ignorant and hurt their feelings. The fact that they have never heard of psoriasis and I can tell them what they want to know and answer questions lets me feel in control of the situation.

I have learned to trust people not to be interested because they think I look bad. I now understand that most of the time they are just curious about something they have not seen before.

Occasionally there will be a person who is both ignorant and stupid and won't even bother getting the facts before they make a judgement or hurtful comment. There are few people like this and I hope Rachel never has to meet any of them!

Best Wishes to both of you,

Carla

[RachelB]

Carla,

Just want to let you know that your thoughtful answers have stimulated lots of discussion with Rachel. She is quite receptive to having her teacher explain psoriasis to the class. She has been teased more than I had realized, although I do know she has been stressed about it. And...stress makes it worse.

She is also receptive to explaining psoriasis to people...instead of just running away....because it works for you.

Thanks so much for your help. I cannot begin to tell you how invaluable it is to chat with someone who has been there.

Karen (Rachel's mom)

[Carla]

Hi Karen,

I am glad that sharing my experience with psoriasis has helped you. Rachel is very lucky to have your support.

I'm glad Rachel is ok about the teacher informing the other kids. It's such a shame that children can be so cruel. I babysit often and find that children will speak their minds about the psoriasis (eg. Yuk! what is THAT!?!) and make bizarre assumptions until I have told them the facts and answered questions. They don't take any notice of it after that. I have been told that I looked like a spotty monster which I thought was quite sweet and funny, but I don't think it would go down so well if it was said to another child. I think it really helps if children are told what it is and how you get it etc. before they try to work it out for themselves!

If you think of anything you or Rachel want to ask in the future or want to say hello, just post a message on this web site - I will check it nearly every day as I use my computer at work to go on the internet. should be doing some work ;0)

Best Wishes,

Carla

[RachelB]

Thanks so much for all your advice Carla. I did a presentation at Rachel's school yesterday. The NPF supplied some wonderful materials and ideas. It went very well. The kids were all very empathetic and the teacher was extremely supportive. Rachel went elsewhere and worked on a project while I spoke to the class. I think they were all able to relate to her after thinking about things for a little bit. And, most importantly I think Rachel is much more comfortable in class now.


That was a wonderful idea. Thanks.

[PJ Leary]

Hi Karen, ( and Rachael, and Carla ),

I come rather late to this exchange, and am very impressed ! I am so pleased to read how Carla helped you and your daughter, Karen. This is one of the highest and best uses of this site.

I am now a very old 42, but was a teen with psoriasis those many years ago. Still have the flakes, too. I agree with Carla, information is the key.

Karen, you can guide and teach your daughter to be her own best advocate in her health management. I say it often, information is power, which you have already discovered. Please continue to encourage your daughter to learn for herself, and to ask questions when she sees her Dr, no matter how silly they may seem to her.

You can expect that she will have the natural feelings of being awkward and self conscious that every teen experiences. I have a daughter who is 17 with p, and one who is 10 with a milder case. My 17 year old's greatest fear is that she will go through life looking like me, and I don't blame her a bit!!

I think that one of the best things we can do for our teens, no matter what challenges they may face, especially this one, is to help them identify and express their feelings, no matter what they may be. No feelings are wrong, but many times if we understand the feelings, we can help to guide in healthy directions. It was very difficult for my daughter to share that particular fear with me, for obvious reasons. She was surprized to know that I understood completely, and shared her fear. She was relieved that I offered her if not a concrete solution, power over her situation, as well as my unconditional love and my guidance.

I would say to Rachael that I hope you will post on the kids' board. Talking with other kids around your age about psoriasis will help you feel better. Especially since psoriasis is new to your family. Even us "grown ups " who have had it for a long time often use the board to "vent" when we are feeling yucky. It helps, believe me, I know. Also, dear, I can tell you, as Carla has, that you can and will have a wonderful life, even if you do have psoriasis. It is important to remember that it is only one very small part of who you are.

Warm regards,
PJ Leary

[RachelB]

Hi PJ,

Thanks for your encouraging words. You are absolutely right about this board (and the kids board). I can get all sorts of information about treatment options from physicians, but the emotional support seems to be unimportant from a dermatologist point of view (in our experience).

Rachel has spent lots of time reading the comments on the kids board, but has yet to get up the nerve to write a comment. (she is very shy) For now she finds it comforting to see that there are other kids with similar experiences. (not that she wishes psoriasis on anyone)

Here's a question for you and your 17yr old. Did either of you find that the psoriasis changed as you went through puberty?

Once again, it is wonderful to hear from adults who have lived with it for years. You are absolutely right that psoriasis is only a small part of who she is. I will remind her of that next time she gets upset.

Thanks for your support
Karen

[PJ Leary]

Hi Karen,

Yes, we did find that it changed during the teen years,in our family it has gotten much worse. That does not necessarily mean that yours will. Each case and each family is different. The researchers verify that as well.

Let me know if we can help further.

PJ Leary

[Carla]

Dear Karen and PJ,

Karen - I am so glad to hear that the presentation went well! I am also glad to hear that Rachel is feeling more comfortable in class, that makes me feel very happy.

My psoriasis also got worse during puberty although this could have been due to the fact that, as a typical teenager might, I decided to take up smoking because I thought it made me look older (not a very clever idea I know!) But everyone is different and I don't think it is possible to make any predictions about what the psoriasis will do next (well mine keeps surprising me!)Try not to worry about what the psoriasis will do in the future.

Karen and PJ, I hope you and your families had a lovely Christmas and have a very happy new year! Sorry it took me so long to reply! I got caught up in all the hustle and bustle of Christmas and New year for a while and forgot to check here (sorry!)Lovely to hear from you again.

Best Wishes,

Carla

[Carla]

I always remember something else after I have posted!

I agree with you PJ, identifying feelings and expressing feelings is so important. I often kept my feelings to myself because I felt as though I shouldn't be having them which didn't help at all. Just being able to speak to someone and being reassured by them that it is ok to feel that way is invaluable.

Best Wishes,

Carla (again!)