SCLERO.ORG
Search
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

Rafvis: Systemic Scleroderma

Italy

Peach Blossoms by Sherrill Knaggs, ISN Artist Hello, I am a twenty-six-year-old girl and about six years ago my legs and hands began to swell up. I also remember that I always felt cold. Then, while I was working one day I realized that some of my fingers had no sensation anymore. There were practically times when I had no sense of touch. Afterwards I learned to understand when this would happen: when I got excited, with temperature changes, but mostly when it turned cold.

I went to so many hospitals. They tried cortisone and antihistamines, but nothing worked. After some research, they diagnosed me with lupus. I took medicine, but nothing helped and the pain was getting worse.

This did not end until I met a girl from Rome who has the same illness, and she took me to her rheumatologist. I started to recover very fast, and now I go there every fifty days.

I can go forward thanks to treatment. Thanks to this center my illness, not lupus, has receded, although it is not gone completely, but at least now I can write and do things that I didn't think I would do anymore.

I read all the stories on sclero, and I thank God my organs haven't been touched. If I can say my own, I feel bad knowing that I also have it. But I keep on fighting because I have a will to live, so I say to everyone: don't give up, keep going.

To Contact the Author

Rafvis
New email address needed 12-20-06 SLE
Old Email Prefix: [email protected]
Story edited 11-20-06 JTD
Story posted 11-28-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Translator: Alba León
Story Editor: Judith Thompson Devlin

LINKS
(Italiano) Rafvis: Sclerodermia Sistemica

Lupus Stories
Raynaud's
Raynaud's Stories
Types of Scleroderma
What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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 Rao: Caregiver of Morphea Patient
 
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 sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.