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

Darlene: Diffuse Scleroderma

I joined a support group in the New Jersey area

GoldWorks My name is Darlene, and in February of 1999, I fell while taking my four children skating. I thought that I might have fractured my right leg because I could not walk on it for a long time. I went to my primary care physician and she sent me for x-rays but noticed that my hands were really swollen and she requested some blood tests to be done. A few days later she called and told me that my x-rays were fine and that I had a disease called scleroderma. I had never heard of this before and she was a little vague about the disease.

The first thing she said to me after she told me I had scleroderma, was do not go on the Internet. Well, the first thing I did was go to Web MD to see what this thing was. The more I read, the more I cried. My husband was convinced that I was going to die. The most difficult part of learning about this was trying to tell my mother. After being diagnosed for certain by my rheumatologist I had to ask my older sister to explain to mom because I was so upset I could not talk for two days.

My doctor sent me to see a rheumatologist, who over a one year period of time sent me to a GI specialist and a pulmonologist. The GI specialist explained to me that sometimes people with scleroderma can get throat cancer and suggested that I have an upper GI performed. I was so relieved to find out that the only thing they found were a few polyps. The pulmonologist sent me to have a pulmonary function test and found that I did have some lung involvement. He then sent me have a exercise echocardiogram. After he received the results he told me that I have a mild case of pulmonary hypertension and wrote me a prescription to become involved in a monitored exercise program. After being in the exercise program for eight weeks my exercise echocardiogram improved.

Every month I have to give blood (which is usually painful because my veins are so small) to make sure that the medications that I am taking do not interfere with my kidneys. Over time and because of my CREST, Sjögren's, rheumatoid arthritis, pulmonary hypertension, skin tightening, acid reflux, fatigue, nausea, vomiting, swollen ankles and knees, soreness all over my body, I am currently taking 15 pills a day to cope with all my symptoms.

Some days I sit and cry and become very depressed but I joined a support group in the New Jersey area, and their support has helped me cope with scleroderma. The people in the support group are extremely helpful to me, but I am not always able to go because of baby-sitting problems. I think I have one of the most supportive husbands in the world and I do not think I would be sane without him. My siblings have also been very supportive and they call and check up on me often.

Now that I have read a lot of literature and I have become more knowledgeable about scleroderma, I feel I can cope with it better. I have learned to focus my energy in a positive manner. I have my hobbies and my children. Some days are more difficult than others but I go to the scleroderma message board and read the encouraging messages and they help. I am just grateful for another day.

To Contact the Author

New email address needed 08-01-06 SLE
Old Email Prefix: JoDar89
Story submitted 5-1-02
Story posted 5-5-02
New email posted 8-13-03

Story Artist: Shelley Ensz
Acid Reflux (Heartburn)
Pulmonary Hypertension
Rheumatoid Arthritis
Go to Dave S: Undiagnosed and Brother of Scleroderma 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!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.