Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Jenny: Morphea Scleroderma
Life with morphea is harsh.

Folies Bergere for Jenny M by Shelley Ensz It started like a purple bruise that never healed. Then the itching began along with noticeable loss of pigmentation. I kept ignoring the symptoms thinking it was a sunspot or something of that nature. When my leg became swollen, I could not ignore it anymore.

I went to several doctors. I was told it was a fungus and, further, that it was clearly all in my head. I went to a dermatologist who told me it was vitiligo. Another said it was lichen sclerosus.

Eight months into the disease, I was finally referred to a rheumatologist who has recently diagnosed me with morphea scleroderma. I have started taking medication for it, but it is really too early to see any signs of improvement. I hope it works.

~ Update - May 2001 ~

Life with morphea is harsh. I have experienced more difficulty with what should be easy tasks. I continuously find myself opening a two-liter bottle or a milk jug with my teeth. My hands are no longer able to close into a fist position. I cannot straighten my left leg or my left arm. I wear sandals most of the time because my foot is in such bad shape. I hate this disease and have trouble understanding how or why this is happening to me. I miss the person I was and hate the person I have become.

I have hope that one day I will be able to wear shorts and run alongside my son without having to worry about what people think when they look at me.

Now I am on medication recommended by a doctor from the University of South Florida Health Sciences Center. I hope that it will work for me.

I am twenty-three and terrified that I am limited to what I do and how I do things. I think about my future and find more and more things that I have not done and probably will not do. I would love to go back to school, but worry about having to write papers, anticipating the pain that my hands would experience.

Although I am finding this to be the most terrifying and terrible time in my life, even more so than when I miscarried, I am finding a little bit of self-acceptance. This new treatment has reduced some of my symptoms and given me hope. As I see or feel any improvement, I believe my 'self' will start returning.

To Contact the Author
Jenny M.
New email needed 09-26-06 SLE
Old Email: jamessmackdown@cs.com
Story posted 4-03-01
Story update posted 5-5-01
Story edited VH1: JTD 9-5-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
Difficult Diagnosis
Lichen Sclerosus
Morphea Scleroderma
Vitiligo
Voices of Scleroderma Volume 1
This Story is Featured in Voices of Scleroderma Volume 1
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to Jenny S: Morphea, etc
Contact ISN. We are a full-service nonprofit scleroderma charitable foundation.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)

Donate in Memory to the nonprofit International Scleroderma Network at sclero.org. We will make a custom donation form and link for you, and send thank you's and acknowledgement cards. We list donors and events in our website and newsletter.

Please help raise awareness of scleroderma and related illnesses by mentioning and linking to the nonprofit International Scleroderma Network at sclero.org in conversations, speeches, web sites, and publications.

(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved