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Maria T: Daughter of Deceased Scleroderma Patient

Italy

Tears of a White Flower by Shelley EnszHello, my name is Mary. I am thirty-three years old, and my mother died five years ago, she had scleroderma. She had been diagnosed very recently, not even five years before that. We had lived in Germany for a long time, even then my mother had symptoms, but everyone said that she had rheumatism due to her work (she was a cleaning lady at an orphanage). Doctors said that the reason why she had joint pain was because of the amount of water that her hands came in contact with every day.

Afterwards we were transferred to Italy, and by pure chance, when my mother went with my father for a hospital visit, at the Battipaglia Hospital (Salerno region) a doctor was there at the right place, right time. He, upon looking at my mom's face and hands diagnosed her with scleroderma, in fact he took care of her until the end. My mother suffered very much, since she was in a lot of pain, mostly her hands and feet, and she could not wash herself, or walk on her own. This lasted about four years, until she was recovering from renal failure that was fortunately cured. I was afraid of losing her then.

The final blow came two weeks after she left the hospital. I remember it as if it were today, that Thursday morning my mother complained of a strong headache, and then she began vomiting, this went on until my father decided to take her to the hospital. When we arrived, her blood pressure was sky high, and on 25th April at four in the morning she passed away.

It is liberation day in Italy, and she was finally liberated from her suffering. The worst thing is that even today we do not know whether she died from a seizure provoked by the illness or the seizure would have occurred naturally even if she weren't sick. I would like to know whether the disease is hereditary since I am married and have two sons.

To Contact the Author

Maria T.
Email: [email protected]
Story edited 10-30-09 JTD
Story posted 11-02-09 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin

LINKS
Italian:
Maria T: Figlia di una Paziente Defunta di Sclerodemia

English:
Caregiver Resources
Caregiver Survivor Stories
Causes of Scleroderma: Genetics
Kidney (Renal) Involvement
Kidney Involvement Stories
Medical: Diseases and Symptoms
Microstomia (Small Mouth)
Sclerodactyly
Sclerodactyly Stories
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

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!

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