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Halina: Mother of Daughter with Morphea (Poland)
I did not know anything about morphea in the beginning,
so I went on the Internet and then cried for a few days.

Jenny in Daffodils for Halina by Sherrill Knaggs, ISN Artist My story starts when we used to live in New York. My daughter was four, when I discovered a small spot on her left foot. I did not want to despair, but after awhile I took her to my dermatologist and he gave the right diagnosis of morphea.

I did not know anything about morphea in the beginning, so I went on the Internet and then cried for a few days. At the same time I started to look for a doctor. Even though I was living in a big city it was not easy to find the right one. Finally I found one of the best known morphea doctors and my daughter started her treatment. The doctor gave her a drug named Plaquenil. She took it for almost two years, but it did not make any changes or improvements. Then I went to another doctor and he advised me to drop all medication and just check her every six months.

When Sonia was seven, we decided to go back to Europe and I tried to find a doctor over here. We went to Poland and started her treatment there. I cannot say that it is better here but we receive different treatment. It has not helped so far, but I am hoping that finally something will start working.

In the meantime, the disease has spread on her whole left leg, some spots appear on her right leg and a few spots on her belly. I tried almost everything including unconventional medicine, but I still have the feeling that I missed something. I know there has to be some medication or treatment that can help.

If somebody would like to share your own experience with me I will be more than happy to answer and share my knowledge and my experience. Thank you.

To Contact the Author
Halina
Email: halkon2@wp.pl
Story posted 10-20-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
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ISN: Polish
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series !
New Personal Stories
Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button...
(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
(Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
More New Stories: November 2008
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