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

Sibel: Scleroderma and Raynaud's


Butterfly and Roses by Shelley EnszIn 1993, while washing my hands, I noticed the whitening of my hands, numbness and cyanosis. İ did not understand what was happening and decided to investigate and went to see a medical doctor. He said there is nothing to worry about just put gloves on cold days and take Adalat. But I didn't settle with this and decided to investigate further.

Changes in my body were very clear. İ wasn't used to tiring so easily and with the fatigue I had started to lose weight, and had difficulty in swallowing. Every day I had to visit doctors. İ was capable of expressing myself. I was feeling different and I was explaining things but none of the doctors were believing me.

İ had gone to various doctors in sequence: a cardiologist for the cyanosis; an ear, nose, and throat doctor for difficulty in swallowing. But I didn't know who to see about the problems with my hands and I was disappointed. My hands and feet were swollen and I had difficulty in grasping things. I had heartburn and I was always lying down. The fatigue was killing me. It was so bad that I was not able to do everyday things.

Changes in my skin was making me look different in the mirror. Deep markings (wrinkles) appeared on my face. İ was thirty-two but I was feeling like forty-seven. Hardness started on the skin of my arm and I did not know what that meant which was scaring me so much. The upper part of my eyelids were also hardening. İ was ill but nobody else was believing me.

One doctor had said it is psychological problem. I said to him," Look my hands and feet!" The doctor replied, "Yes there is “something.”

At a loss, I decided to see a dermatologist and she said, “Tell me your story,” and I told her what I had experienced. She listened to me until my very last word which was a first among the doctors I had seen. She first noticed my hands which were very hard and stretched. She said that I had scleroderma and should call a rheumatologist as soon as possible. She tried to explain scleroderma to me. This was the first time I had heard about scleroderma so I was a bit scared because I did not know what to do, but on the other hand I was happy because I got a diagnosis at last.

After a grateful thank you, I left the doctor's office and walked to my husband who was waiting in his office. While walking I was trying to think but it was very difficult to concentrate. I was unable to remember everything the doctor said. İt was very difficult to breathe. When I arrived at the office of my husband, I started to cry and thought, 'I have a very very bad disease.' I tried to calm down but it was very difficult.

This is the way I met scleroderma.

The next day I went to the rheumatologist's office for tests and medication. After a lot of tests I had started to take medication. But there were a lot of side effects. Although I had started medications, my complaints did not stop. İ was afraid to look in the mirror. Every day I was calling my doctor in panic. Some times he was postponing explanations.

My problems got bigger and wounds appeared on my hands. I was asking “why me?” My heartburn and the cyanosis in my feet got worse when it was cold outside. My problems and complaints got bigger.

İ was barely walking, although I used to love walking. For three months I didn't sleep. I always had pain in my feet because of gangrene and necrosis.

In 1996, I had some toes amputated. But the pain was not over. For five months I tried to walk with crutches. In the spring I was regenerating. Wounds started to disappear but I had to be protected from sunlight because my skin was so tender.

İ was seeking more information about my disease. İ had a diary and was writing about this experience. I also started to write poetry again. İ thought I should share what I had learned and what I had lived. İ also thought I should build a new lifestyle. I noticed that I needed counseling so I went to a psychologist.

The side effects of medications that I had made me very sad, for example because of lung involvement I had chemotherapy which caused me loss of hair, so I cut my hair.

Now I share my experiences in some organizations. I tell people what I have, what I felt as a patient who had a rare disease that many have never heard of and also how I felt as a wife, as a mother and how I will keep going on as I live.

Go to Silezia: Mixed Connective Tissue Disease
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.