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

Lisa V: Diffuse Scleroderma and Raynaud's

When I first got sick, I thought I was dying.

Chrysanthemums for Lisa by Sherrill Knaggs, ISN Artist I am thirty-nine years old. I have had scleroderma for seven years. When I first got sick, I thought I was dying. My fingers started hurting really bad. I did not know what in the world was wrong with me. My local doctor sent me to the emergency room, where an internal medicine specialist diagnosed me with Raynaud's. I had been his patient for a year. He finally told me that if I did not get to a rheumatologist soon, that I could die.

I started out at the Medical Mall in Jackson, Mississippi, until I got on disability. Once I got my disability I found my own doctor. I have a great doctor. She has been able to get my disease under control. Her name is Dr. Valee Harisdangkul, and she is wonderful. When I started seeing her, the scleroderma had already moved to my face. Since then it has moved back down to my elbows. My hands and arms are crippled.

In the last eight months I have felt better than I have since I have been sick. I am a survivor. I have a nineteen-year-old daughter, and a four-year-old grandson. That's worth fighting for!

For the first year I did not lay down, I did not sleep. If I even looked at a bed I would scream. I was taking a strong dose of pain relievers but I am back down to a lower dose now. I am on various medications for circulation, damaged nerve endings, blood thinning, finger and elbow ulcers, and for stress.

If you wonder how I type, I use one finger on my left hand. On my right hand, all my fingers are bent under, and my arms are contracted at the elbow.

My mother has been to every doctor appointment with me since I have been sick. We traveled to Oxford, Tupelo, Tennessee, and back to Jackson, Mississippi, for treatment. She has stuck with me from me screaming in pain, day after day, and not being able to ride but for a short distance at a time without pulling over for a break.

I love my mother. There is nothing better than having her at my side. She has probably heard and responded to my every cry. May God bless her! Thanks, Mom.

All my meanness as a teenager is paying off. I have strong will power, and a lot of faith. Please feel free to email me if you like. Thank you so much for letting me share my feelings. I hope this will help somebody who is going through the same thing I am.

~ Update 06/03/2016 ~

Hi everyone, I'm still alive! It's been a long time since I've posted and I forgot how to find the website; all along I had the Scleroderma volume 2 book where my story was published in 2004.

I have been in remission for 9 years! I had to start going back to a rheumatologists; my left ribcage has fused, both lungs are honeycombed but they probably have been doing that at a slow pace because last year was the first time I've had a CT scan on my lungs and I can't tell any difference as far as breathing.

My fingers on my right hand are still contracted and my left one is trying to do the same thing, but I'm still doing the same things I was doing back in 2004, so for all you guys out there, don't give up and continue to hold your head high and keep having faith, which will take you places you never dreamed of. I will continue to believe that until I leave this world and I'm not on nearly as many medicines as I once was.

I hope that my story update inspires you to keep on pushing forward!

To Contact the Author

New Email: [email protected]
Story posted 8-14-02
Story paragraph added 8-20-02
Email updated 7-13-03
Story edited 7-13-03 SLE
New email address needed 9-2-03 SLE
New email posted 8-14-04 SLE
Story updated 6-3-2016 JEF
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Diffuse Scleroderma
Finger Ulcers
Lung Involvement
Sclerodactyly (contracted hands)

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Lisa W: Diffuse Scleroderma, CREST and Multiple Sclerosis

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)