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

Manu: Daughter of Patient with Systemic Scleroderma


White FlowerHello everyone, I recently lost my father, and in his last moments he suffered very much. He was affected by systemic scleroderma that began with a simple inflammation of his hand in November of 2006. This degenerated very quickly until the end, on November 3, 2009.

In quite a short time the illness had attacked his kidneys. He was subjected to dialysis three times per week, as well as his heart, lung, intestine, and esophagus. His weight dropped constantly, his skin hardened and turned dark, his hands began to curve at the fingers and he had arthritic pain.

We tried everything to save him, but it was not possible. The cures, mostly intravenous, that he was subjected to, did little to help him. In the last days, it was not even possible to do that, because he would go into cardiac and pulmonary arrest.

I hope sincerely that the research on this terrible illness can give answers and positive news to everyone that is affected by it. I had never seen such suffering, and I hope I never have to go through it again.

To Contact the Author

Email: [email protected]
Story edited 12-03-09 JTD
Story posted 04-02-10 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Manu: Figlia di Padre Malato di Sclerodermia Sistemica
Cos'è la Sclerodermia

Caregiver Resources
Survivor Stories
Heart (Cardiac)
Heart (Cardiac) Stories
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Gastrointestinal Involvement
Skin Fibrosis
Skin Fibrosis Stories
Sclerodactyly Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
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 Margot: Morphea, Linear and En Coup de Sabre

Giving Assistant
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 button.


TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

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. Privacy Policy.

The most important thing in the world to know about scleroderma is!

Donate Now
Copyright 1998-2018, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.