Hello, 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.
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
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: