Hello, I'm Dimitra Stafilia, the ISN Translator for ISN: Greek version. My mum has been suffering from scleroderma since 1992. It first started as an acute pain of her fingers. Whenever it was cold her fingers would turn blue and then white. She first went to an angiologist who suspected that the problem could be more serious and referred her to a rheumatologist who diagnosed her as suffering from scleroderma. At least she was lucky enough to have doctors willing to examine all possible explanations for her disease.
That was a new reality for the whole family. We had no idea what it was, where it came from or how serious it was. I was still in high school and had no concept of the suffering it would cause her. Admittedly, my mum started reading and learning about her disease. The use of the Internet was not that widespread in Greece so it mainly got her information from encyclopaedias and from my aunt in New York.
Where did her disease come from? I have read articles that say that it could be environmental or genetic. For many years we lived within an industrial zone. My father, until his retirement four years ago, worked for a company that produces nickel. (Actually, it was a mixture of iron and nickel. The soil that was mined also included small quantities of cobalt and copper.) I haven't heard of any other people living in the area having scleroderma, but then again we stayed in the area longer than most of them did.
Over the years her illness progressed rather badly. She got arthritis and her fingers were disfigured, the nails split so that you could see the flesh beneath them. She got pulmonary fibrosis, problems with her oesophagus, high blood pressure and dyspnea (shortness of breath) just to name a few of the problems. She has to take a cocktail of drugs to fight the individual symptoms and visit specialist doctors regularly to run tests for her heart and lung conditions. The use of cortisone for the fibrosis caused her osteoporosis (still at the initial stage). Because of the drugs she is also overweight. This worsens her condition. My mother is fifty-one years old.
I started looking into her disease when I went to University. I visited the Royal Free Hospital in London and I wrote to the American Scleroderma Association. However, there was no documentation I could get ahold of easily in Greek and there was no way to know whether her doctor was in touch with the latest developments or whether he performed the necessary tests.
I believe that the patient should be able to know about, question and agree on the treatment, and this was not happening in my mum's case. Thus my interest in translating the pages of SCLERO.ORG, to give other Greek patients the opportunity to know a little bit more and to know that there are other people with similar problems.
As for myself, I am a qualified translator working as a project manager in London. I think no academic or professional achievement is enough, since I am not around to support my mother psychologically, so this is my small contribution.
Email: [email protected]
Story submitted 3-15-02
Story posted here 7-15-02
ISN Senior Artist: Sherrill Knaggs
Dimitra Stafilia: Greek Version
Dyspnea (shortness of breath
Environment or Genetics
High Blood Pressure
ISN: Greek Version
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!
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.