(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

Iceback: CREST or Limited Scleroderma

Two weeks ago, after seven years of a very severe case of Raynaud's, I was diagnosed with scleroderma. My rheumatologist said I have CREST or Limited Scleroderma and to come back and see him in two months. I originally went to see him for what I thought was a complication from the Raynaud's, an infected ulcer on the end of one finger.

Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet. Well, I certainly found a lot of information and do not really like what I found. Now I am having a hard time thinking about anything else. After reading about some of the symptoms, I have discovered a few things that I have had for years like, heartburn, problems swallowing andred dots on the palms of my hands that may all be related to this disease.

I am a thirty-seven-year-old man with a wife and two very young children. I rarely ever missed a day from work on the local auto assembly line. My wife and I have long term goals and plan things out well in advance. We try to do all the responsible things like retirement and education planning. Now my world has been rocked. I missed eight weeks of work and do not really know if I will be able to continue, or for how long, with the type of work I have done since I was eighteen.

I feel like I have run into a wall at this point and am looking for a door that will let me continue on with my life as I planned it. I have made an appointment with anotherrheumatologist who specializes in scleroderma, but will have to wait another ten weeks for that.

In the meantime, I am on a roller coaster of fear, depression and confusion. What a ride.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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 Story Editor: Judith Thompson Devlin

Judith 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!

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:

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