(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

Mel: Just Diagnosed with Systemic Sclerosis

My exhaustion affected by life so badly, at times I was not able to work.

I have recently been diagnosed with systemic sclerosis. This prognosis has absolutely rocked my world. I am only twenty-eight years old and feel I have only just gotten my life on track.

Approximately ten years ago, I started to feel extremely run down and found that I had a very strange rash on both arms. Doctors did various blood tests for my fatigue but never came up with any solid conclusions. I was accused of suffering from depression by a number of doctors. As I told them, I suffered from depression as a result of being so tired. My exhaustion affected by life so badly that at times I was not able to work.

As for the rash, they assumed that it was just a rash and gave me various creams which did absolutely nothing.

Six months ago, I moved back to my home town. I began to get extremely sick every few weeks. I had no idea what was going on. I thought I was simply a "drama queen.' My work and life were being affected as a result. After much persistence, I was diagnosed by a doctor who fortunately had researched systemic sclerosis.

I was at first shocked by all the information on the web site and my instant reaction was one of fear. Now after much contemplation and research I am confident that I will be okay.

I am still not sure how this will affect my life moving forward. Tomorrow I go to a specialist, so I should, hopefully, know more soon.

I would not wish such a disease on anyone, but I am grateful for the love and support I have at this very scary time in my life. I hope by remaining positive and with care, I will remain reasonably healthy. What I wonder is:

Am I being too optimistic?
What should I really expect?
Does this affect childbirth and how? (this is my greatest fear).
How do I make sure I get the right treatment?

I look forward to hearing from others with much needed advice!

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's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.

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!