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.
Email: [email protected]
Story edited 12-07-04
Story posted 12-12-04 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
(Português) Escleroderma de A a Z
Pregnancy and Scleroderma
What is Scleroderma?
PDF Brochure: What is Scleroderma?
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.