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

Maria T: Daughter of Deceased Scleroderma Patient


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

Maria T: Figlia di una Paziente Defunta di Sclerodemia

Caregiver Resources
Caregiver Survivor Stories
Causes of Scleroderma: Genetics
Kidney (Renal) Involvement
Kidney Involvement Stories
Medical: Diseases and Symptoms
Microstomia (Small Mouth)
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!

Go to Mariam: CREST
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!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.