TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
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: mariatrabucco@live.it
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 Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Translator and Editor: Alba León
Alba Leon, ISN TranslatorAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Mariam: CREST
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved