How can I help my daughter

[Gypseyt]

My beautiful 19 year old daughter, was diagnosed yesterday as have a very rare type of psoriasis, and they have given her both medication and a cortizone cream. In three days they will assess the results of the medication before deciding on another form of medication if necessary. The doctors have also told her she must only have cold showers, must cut her nails very very short and must avoid make up and certain shampoos.

But how can I help her mentally and emotionally. The psoriasis covers the upper side of her hands and feet, her stomach and back and to a lesser degree her arms and legs. In the past week she has gone from a gregarious, sociable teenager, to one who will not leave the house, and I know I have to take action now, before she wallows too far into this issue.

Please help me. I love my daughter too much to watch her suffering like this.

Concerned Mom
South Africa

[nrasher]

My heart goes out to your daughter. From the sound if your post, it appears as if her psoriasis came on fast and hard. This makes things even more difficult as she has had little time to get "used "to the disease. The two biggest issues your daughter faces are emotional/social and physical. Given your daughters age and nature, to suddenly perceive herself as different from her peers (even though she is not really different) is hard. She is going to have to examine her view of the world to re-establish her place in it. The physical component is exhausting, particularly at the beginning before you have had a chance to become habituated to the new sensations. The amount of energy necessary to deal with the discomfort and itching is enormous. This energy is then not available to deal with other things.The tempation to tell her to get up and go about her business will be strong because if she is able to do so it will ease your suffering.
Remind of her of your love. Help her with her medications, make sure she treats the disease. This disease while not curable is eminently treatable. If her depression becomes too deep get her some professional help (from someone who understands the correlation between disease and depression) With treatment, your obvious love, and your daughters natural disposition, she will come to terms with this problem and resume her life. It make take a little time though.
Nick

[MikeK]

My heart goes out to both you and your daughter. I was once a teenage with psoriasis. I was diagnosed with plague psoriasis in 1964, when I was 7. I know exactly what she's going through. Hopefully, the medications that her doctor prescribed will help keep things under control. As you've probably discovered, there is no cure. :(

As for the emotional end of it, Nick pretty much said it all. I can't add very much to what he said. This is not an easy disease to live with. You're wise to be concerned about your daughter's emotional well being. Talking about it helps. Encourage her to post here and to seek professional help if necessary.

You're also going to need a lot of emotional support. You've come to the right place. Please don't be a stranger. We're all in this together!

Take care,

Mike

[hazy]

I also present my heart to your daughter and yourself. There are many wonderful people in this group who have vasts amount of knowledge and support to give to the both of you.
For your daughter you must stay strong and focused to what will help her the most. This message board is one of the best places to find out about medications and treatment, old and new alike.

I would also suggest that you have your daughter get on the computer and visit this board, she can meet others close to her age that are also going through this terrible desease, and she can see first hand that she is not totally alone.

Bless you both.........

[Carla]

Hi there,

You are already helping your daughter by recognising that psoriasis is more then a physical problem. As Fred suggested, encourage her to join this message board and meet other people in her age group with psoriasis, it will help her to feel less isolated. I am 21, if she would like to contact me she is very welcome to send me private message.

Thinking of you both,

Carla
xxx

http://hjem.get2net.dk/petermad2/flags/unitedki.gif

[Gypseyt]

Thank you to everyone who has replied. It is good to know people actually care. So often people just go through their lives only worrying about themselves.

I will get my daughter to join this group, and spend time on line with other people (young and older) who suffer with psoriasis.

Yes it did come on very suddenly, and because no-one else in the family suffers from it, it was all very new to us.

Thank you again.

Debby

[Carla]

You're welcome Debby,

We are all here for you if you have any more questions/need support.

Best Wishes,

Carla
xx

http://hjem.get2net.dk/petermad2/flags/unitedki.gif

[joseph1]

Hello,
I just joined this site today and reading about you reminds me of how I felt for a long time. I know you were just told you have P and you probably feel you don't want people to see you like that. I have had P since I was four years old I am now 30.
All kind of things come into your mind, boys,friends and how can I get rid of it. Well you may know there is no cure yet and I like many others must hope they will have a cure some day.
You know psoriasis is a strange thing it sometimes comes and goes it gets worse then better but you can help it. Stress does make it worse and your psoriasis is probably your biggest stress cause right now. Try not to think about how bad it is and you will see it does get better. I don't know about what your doctor has told you but hot baths have never made it get worse for me also you can ask your doctor about a clobetasol propionate cream, I have used it for a long time with no side affects and it changed my life. Your mom said you are a beautiful girl and you still are, your outside can not change who you are inside do you understand. You have not changed who you are by having psoriasis you only think you have. The biggest thing to remember is you are not alone there are thousands of us and we all have or will have husbands , wives, children and go on living you will see I promise. If you want to ask questions or just vent some frustration I will write you back. Summerandjoseph1@yahoo.com

[dan83]

HI there, this post happened to catch my eye and i thought i'd reply because i can really relate to what your daughter is going through. My name's Dan and i'm 19, just when i turned 18 i was diagnosed with P. Having never had it at all throughout my teenage years i went from being completely clear to almost totally covered in literally no more than a week. The pace with which the disease spread was frightening and for a while it completely changed me. I was always a popular guy at school, very sociable and with a relatively normal love life etc but the disease robbed me of all my confidence. I didn't want to go to school because i didn't want my friends to see me. When i did go i was always trying to hide my face which inevitably caused my friends andf those around me to think that i was acting strangely. I stopped socialising at the weekends which had, before the disease, been the highlight of my week!I'm very grateful that was able to enjoy a P free time for most my teenage years but one cannot underestimate the devastation and shock that a diagnosis (and especially when it comes out of the blue at a relatively old age) can cause. I can totally understand what your daughter is going through. One of the major things that i found hardest to deal with was the fact that i simnply couldn't believe that this had happened to me - i felt that i wasn't the 'type' of person who gets diseases like this. Obviously since i found boards like this with so many awesome ppl i realised that there isn't a 'type' of person who gets this but that was how i felt at the time. I guess i just didn't think that it fitted in with the totally normal life that i had led up until that point. I think where some parents go wrtong in a situation like this is by trying to get their child 'back to normal' as soon as possible. I think that time should be taken to understand the disease and to allow the child to at least take a bit of time to get over the initial shock. I know that that is what i needed at the time.

There are things that must be remembered, even in the darkest days. Firstly, it is really surprising how sympathetic most ppl are when they are told exactly what the problem is. You can rely on friends to be there for you. Also, although it seems crazy to say that there is a good time to be diagnosed (and believe me i know that at the age of 19 no one wants this affliction) but, at least your daughter's friends, schoolmates, uni friends etc will, on the whole (at least one would hope) be at an age where they can respond to a friend with a disease like this in a more mature and therefore positive way.

I found that at first i didn't even want to talk to ppl with the disease simply because i didn't want to be reminded of it in any way. I'd get really irritated even when my parents or friends mentioned the word 'psoriasis' - i hated hearing anything about it. Your daughter may well feel the same and that is totally understandable. However, i would encourage her, when she feels ready, to try and talk to others (this site is a great place to do this) with the disease, esp those of the same age. It really does help knowing that there are many others who have the same feelings and frustrations. People with this terrible thing do not have to suffer alone.

Perhaps most importantly is the realisation that, although the disease is with u forever, this certainly does not mean that the symptoms will be. When i got it i immediately thought that i would be forever covered in red patches. However, after about a month of topical and light treatment almost all of the patches disappeared and since then i have been virtually clear with only a few tiny dots on my upper arms that can usually be combatted just with cream. I know that imay well have another attack and i don't know when but like me, your daughter can take comfort from the fact that she has always had the disease and yet has been clear of it for the first 19 yrs of her life. Theres no reason why in the future than can be another 19 yrs of freedom from P. Of course, with such an unpredictable disease there are no certainties but i'm a firm believer that a positive frame of mind and a determination not to let the disease beat u has a very positive reaction on the severity of the disease.

Anyway, i'm probably rambling but i hope this post is of some help. I wish you and your daughter every success and i hope that things take a turn for the better. Whatever happens, stay positive! If your daughter wants anyone to speak to then i'm more than willing, after all we're the same age and both know how much this thing sucks!! Best of luck,

Dan.

[PJ Leary]

Hi,

Welcome to the board.;) I am both a psor, and the mother of children with psor. I have had p for 27 years, since I was 16. So, I do remember, like others here, what it was like to be a teen and young woman with p. It is crummy, for both of you.

I will add one thing to this thread, others have already given excellent advice about the physical and emotional aspects of dealing with psoriasis.

Information is power.

I also encourage you both to use this forum to your best advantage, and the NPF website and resources to guide you in your new most important subject, learning about psoriasis. Read the messages on the general board, there is a lot of sage advice there.

When you have questions, please come here and ask us!:cool:

[FlakeyMatt]

I also was diagnosed with P in my late teens and how to deal with the burdeb of the disease coupled with the added weight of beening a teenager.......Let your daughter know this.....

She is not alone.......She has you and she has all of us.

Be aggressive in treatment.....P tends not to go away on its own. You can try and ignore P but it won't ignore you.

Be supportive and patient, THis is so tough to deal with on so many levels and perhaps the hardest thing is the general public understands so little.............

Anyway, all the best to both of you and remeber we are for you..... FlakeyMatt