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

Jan: CREST Syndrome

Never give up hope!

Flowers for Jan by Shelley Ensz My name is Jan Landis, and my story is quite long, but it is very hard to make 20 years fit in a small space. I have done my best and I hope it is worth reading and brings at least one person a little comfort.

It was a day in my life that I should never forget. However, I do not remember what day it was, I believe it was 1977. I can remember waking on a summer morning and finding my fingertips purple and hurting. The only way I could describe the pain was that it felt as if I had been dumb enough to grab a hot pan, but I did not remember doing that. And that did not explain the purple color. I, of course, made an appointment with my family doctor.

He said he thought it was Raynaud's Syndrome, but that he did not know much about it and referred me to the Research Center of the University hospital. I spent a week in the hospital undergoing many tests. Then I spent about four years as a guinea pig doing their ice tests which consisted of measuring the temperature of my fingers, then dipping my hands in ice water for 30 seconds, then measuring the temperature again until they returned to normal temperature, which rarely happened within their two-hour testing period.

My life during those years was very hectic. I was raising three boys (mine, his and ours) and trying to hold a job when I could. I do not remember exactly the advancement of my health problems. Sometime during the next three or four years I began to see a rheumatologist. I was having terrible lesions on my fingers and was in excruciating pain. I applied for Social Security Disability in 1986 and was told I should be able to find a job I could work at; the normal it's-all-in-your- head diagnosis. So, as we were preparing to move across country, I let everything slide.

In our new home town I was shuffled from one doctor to another because we had no medical insurance, so I was again seeing doctors in a teaching university. However, this is where I was finally given my diagnosis of CREST. I tried again to work to help support the family, but after six weeks on the job I was again in such pain that I could no longer work. It took nine months for my hands to finally heal. I again applied, and was given my disability.

After five years in the midwest, we again moved across country, back to the west coast where I found the weather to be a little more moderate and better for my health.

It has been a struggle for the last 15 years, but I have always been thankful that this monstrous disease took a slow course. I started having breathing problems about three years ago. I would become short of breath if I tried to do much walking. I put it off to being a smoker, but when I mentioned it to my doctor he, of course, requested some tests.

My lung functions had diminished and X-rays showed signs of fibrosis. He gave me the news that he had no idea how fast the disease would progress. He gave me two options, one was to do nothing, and the second was to start cyclophosphamide which is chemotherapy treatment. Well, of course, option one was out of the question so I resorted to the second option. The doctor gave the cyclophosphamide therapy about a 20% chance of doing any good, but it was my only hope, so I began the treatment in January of 2000. I see my doctor every three months for a treatment and check-up and I think every time he walks into that room he is surprised to see me. I am feeling better now than I have in many years. I have had no flare-ups since I started the treatments. My breathing does not seem to have improved, but it does not seem to have deteriorated, which to me is just as good!

I guess the reason for writing this is to let everyone out there who is suffering through these terrible things know that you should never give up hope. Set goals, maybe just short ones, but set them. My first goal was to be here to see my youngest son graduate from high school. He did in 1997! So now I have set another to live to see my 25th wedding anniversary (June of 2004) - I will be there!

To Contact the Author

New email address needed.
Old Email Prefix: immee
Story submitted 5-13-02
Story posted 5-25-02
Email note posted 01-18-05 SLE

Story Artist: Shelley Ensz
Digital Ulcers
Ice Tests
Raynaud's Syndrome

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

Go to Jan L: Linear Scleroderma and Vitiligo

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)