SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Fred: Future Spouse of Scleroderma Patient

Portugal: Week 10 out of 40

Scottish Teddies by Sherrill Knaggs, ISN Artist I met a girl five months ago and immediately fell deeply in love with her. I did not immediately notice that something was wrong with her hands and her face. I just thought her hands were dry and needed some kind of hydration. I advised her to use some hydrating lotion but her reaction was aggressive and weird. I did not give much importance to her response and our relation followed a normal course with ups and downs like most of them do.

It took her some time to tell me about her problem but she did not give me many details. She told me she had a rare disease named 'esclerodermia ', the Portuguese word for scleroderma. I regret that I did not give much importance to this fact. I thought it was a 'no big deal' disease.

On one of those days at work with not much to do, I decided to search for information on the internet about her problem. I was frustrated because I could not even remember the name of the disease. After many trials in a popular search engine I finally remembered the name 'esclerodermia'. Soon after I found the English name 'scleroderma'.

I finally realized what her problem really was and the suffering it caused to her in the past and in some way still does at the present. Sometimes we speak about her problem but I try not to ask too many questions because I feel it can hurt her. I prefer to gather information on the web and learn as much as I can. I am certain it will be useful to us in the future. However, I am afraid that she does not know what she should know about her disease. She does not even know if she has localized or systemic scleroderma.

Two months ago, magic happened. She became pregnant. It was very early in the relationship, but I feel this was the best thing that could happen to us. I have read all those articles about pregnancy and scleroderma and most of my initial scares faded a little. The percentage of success is high and I feel optimistic that her pregnancy will have an happy ending both to her and the baby.

I just hope that I will have all the strength in the world to help her if things do not turn out the way we dream.

To Contact the Author

Fred
Email: [email protected]
Story edited 12-07-04
Story posted 12-12-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
(Português) Escleroderma de A a Z
Localized Scleroderma
Pregnancy and Scleroderma
What is Scleroderma?
Systemic Scleroderma
PDF Brochure: What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Fykah: Systemic Lupus Erythematosus (SLE)
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.