My Daughter Has Psoriasis

Psoriasis as a word meant very little to me until several months ago, but now since my 8-year-old daughter Trina was diagnosed as having it, my entire life has turned around 24 hours a day.
Trina is the second of my three daughters who was always a fun, loving, kind, gentle, happy, beautiful girl who loved life and all things about life, but now she has changed.
I guess I will start at the beginning. One morning in February 1986, I noticed Trina scratching her head so I checked it and found a red raised rash around her hairline. Right away I took her to a doctor. He wasn't sure what it was so I requested she see a Dermatologist. She was put on a six week waiting list. Each day she kept getting worse so I called the doctor and she was seen in four weeks. By this time, the rash had changed and covered her entire scalp and down her back. Finally she was admitted to the hospital. After several opinions we were told it was psoriasis. She stayed for three weeks and all kinds of smelly treatments were used on her. I soon learned the nurses were not familiar with children who had psoriasis and did not know how to apply her medication. After three weeks of crying, distress, confusion and a lot of anger she finally came home. Three weeks later it was back. We hate what psoriasis has done to our daughter. I now dream that our child as well as other sufferers of this disease will someday be relieved of it forever. I try to keep seeking new ways to help her cope. I also hope the community we live in will become more aware of psoriasis.
"I know we are not alone, until I recently received a telephone call from Judy Misner, I truly felt we were."
I could go on a lot more with my story, but I will end here just by saying THANK YOU FOR LISTENING AND THANK YOU FOR THE PSORIASIS SOCIETY OF CANADA for their understanding as I think a person who is forced to live with this disease can truly understand my feelings, for no one else can.

There is something worse than the heartbreak of psoriasis, and that is being a parent of a child with psoriasis. He was 4 years old when he got psoriasis.
To watch your child being teased and laughed at by playmates because they think he has lice, or listening to him cry as he tries to tell you of a boy sitting behind him in class, running a pencil up under his hair lifting it to reveal the scales which he is desperately trying to hide.
As our son grew, so did his psoriasis, and now he has it all over his body. One winter he enrolled in a class for swimming lessons. Of course he would not dress with the rest and this made him different from the start. His instructor asked him in front of the class, what was the matter with his skin and was it catching. Obviously, she had not read the registration sheet which carefully explained his condition and that psoriasis was not contagious.
By the time he was five his skin was at its worst. We finally found a doctor and this was the beginning of positive thinking for all of us as the doctor taught us confidence and encouragement. The doctor put him in the hospital and started treatment.
Around this time his class was preparing to do an annual oral presentation and he had not picked a subject yet. I suggested he might do a presentation on psoriasis. His reply was flat "no". However, when I pointed out that if his fellow students knew the facts about psoriasis, they might be more tolerant. We gave him time to think about this and thank goodness he decided to speak on psoriasis as that seemed to be a turning point in his life.
We went to the library and did some research and sad to say, there was very little information available on psoriasis. However, the day came with him going off to school, a bit nervious, but a very determined boy. When it was his turn and he started to speak about psoriasis, the teacher said "you could hear a pin drop". She was very proud of him as he spoke, realizing how important this was to him. He ended his presentation by telling the class that the worst thing about having psoriasis is the teasing. The teacher said there were 29 students and there were 29 questions about psoriasis. Our son answered all the questions and he was so pleased he could finally talk about his psoriasis and not be embarrased.
The interesting thing about all this was the fact his classmates became very protective and defended him against anyone teasing him about his psoriasis. After his presentation, our son learned that family, friends and teachers also suffered as he did and he was albe to talk about it.
I guess in closing I would add sometime we, as parents, feel alone in our suffering, therefore I sincerely hope we can help one another in knowing we are not alone.

What are those ugly scales you have on your knees?
Have you been scalded or bitten by some fleas?
I looked up in amazement, my poor eyes filled with tears.
My dear, I have psoriasis and I have had it for years.

Psoriasis is a skin condition as everyone should know.
These ugly scales usually cover us from head to toe.
When we wake up in the morning with scales on the floor.
They itch so much we scratch them and make them really sore.

Now if you have psoriasis or plaques upon your skin, do not
be embarrassesd for it's no shame or sin.
I advise you see a Dermatologist - who will offer you some help.
To heal those ugly patches you have on your scalp.

Now in ending this my story, there is something i must relate -
Don't sit around and hesitate - do something before it's too late.
There are tars and PUVA treatment and even Ultra violet Ray.
To heal the itch and heal the plaque - so go and do it TODAY...

Dear Little Girl
The Little Blind Girl may never see the beauty of a glorious sunrise.
The Little Deaf Girl may never hear the music of a mother's voice.
The Little Lame Girl may never know the job of walking along a wind swept shore.
The Little Girl with a Red Scaly Face marked in the shape of a butterfly may never know the happiness of being loved.
Of all the girls, none shall ever know the pain as the little girls the disfigured face and skin. Day by day, week by week, month by month, year by year.
For age two years, this little girl suffered through long cold winters and hot dry windy summers which burned her skin and caused it to itch and crack open. When she went to school, some children called her fish face and only one little girl would hold her hand when playing games.
Poverty and skin disease are almost insurmountable, yet this little girl never gave up.
In search of a cure she travelled from doctor to doctor, climate to climate. After her heart had been broken a thousand times and all her dreams shattered she began to get better and her face cleared up. Today this little girl has grown up and if she had one million dollars she would buy a mansion in a tropical climate where people with psoriasis could spend some time bathing in a glorious sunshine.

Psoriasis is a problem
as you can plainly see,
And it could come on anyone
just as it did me.

The doctors tried to help
to clear it off my skin,
But it just keeps coming back
again, and again.

When I first got psoriasis,
I was just a kid,
And I used to blame myself.
I thought it was something that I did.
Because you see I did not know
When I was so young,
That there were other people too,
I was not the only one.

If only I had someone with
whom to talk,
It wouldn't hurt so much
When people pulled away from me.
And they would not touch
Even though I told them,
They would not try to see
That what I had, they could not catch from me.

And then they started to be cruel
To call me awful names,
They did not see the pain they caused
When they played their little games.

But now there is a place to go
Where others have been throught
And no longer feel so alone
Nor do I feel the shame of this I am sure,
That one day in the future
I know there will be a cure.

But until that day gets here
Who else will go through this,
Just because they have a disease
That is Psoriasis.