SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
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

Shirley: Progressive Systemic Sclerosis

Thank you for listening.

Fancy Holiday Vase for Shirley by Shelley Ensz I found out about my scleroderma on November 1, 1971 at four in the afternoon.

Difficulty swallowing was the thing which got my doctor's attention. I was very fortunate because my doctor had a friend in medical school whose wife had scleroderma, so he saw right off that it was scleroderma.

Life with scleroderma is not easy but can in fact be handled by simply listening to the doctors.

Mine has spread to my female organs and is now in my liver causing cirrhosis. It is also in my lungs as well.

I have Raynaud's as well. Then there is the high blood pressure. Along with this comes the thyroid problems and type 2 diabetes.

Right now my right hip and knee are going stiff. I just got out of the hospital after five days with pneumonia. I have had lots of trips to the hospital and I now walk with a cane.

After all these years, I believe I have handled scleroderma very well. At the moment I am on several medications for the effects that the scleroderma has had on me. I do believe in keeping doctor's appointments regularly.

Heart doctors and gynecologists have all closed the book on me, as anything I might get in these parts of my body I am told I would not live through the treatment. This includes cancers; nothing would be done for me for that.

I hope this lets you see how I am handling this thing. Thank you for listening.

To Contact the Author

New email address needed 7-13-03 SLE
Old Email Prefix: ssknox
Story Posted 11-30-99
Story edited 7-13-03 SLE

Story Artist: Shelley Ensz
CREST Syndrome
Diabetes Stories
Difficulty Swallowing (dysphagia)
High Blood Pressure
Liver Involvement
Lung Involvement
Go to Shirley S: Surviving Spouse of Scleroderma and Lupus Patient

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.