SCLERO.ORG
Search
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

Donna S: Odd Version of Scleroderma

"They have never seen this condition with scleroderma"

Chrysanthemums by Sherrill Knaggs, ISN ArtistI am a female, thirty-nine years old. I suffered my first symptoms in May 1999, and was diagnosed in October 1999. I have systemic scleroderma.

The major involvement is my ankles and feet. I have joint stiffness in my fingers, hands, wrists, and knees, however, I have no hardening of the skin in those areas. The hardening is on my ankles and tops of my feet. My toes are fine. I do not have any internal organ involvement, yet. I also do not have Raynaud's and have no problem with cold temperatures other than a slight stiffness in my joints. I have never had ulcers on my fingers or toes, therefore, they could not deem me with localized scleroderma. I have never had internal organ involvement, therefore, I am not textbook systemic. I sort of have the worst of localized and the best of systemic scleroderma.

My dermatologist has spoken with numerous dermatologists across the country, and they have not heard of my particular case of scleroderma. They also have not heard of blisters being associated with scleroderma in any form, but I certainly have them.

My first symptoms started as muscle fatigue and soreness. Then I retained a lot of fluid all over my body. I was given prednisone to relieve the fluid which worked quite well. I lost six 'pounds' of fluid the first night of taking the prednisone. Soon after that my hands began to draw up. I had four months of physical therapy and responded quite well to that. I am now able to completely open my hand and make a fist, however, there are still somejoint contractures.

I had begun light treatment for three months, but I had to terminate the treatment due to ulcers forming on my ankles.

In July 2000, I started getting ulcers on my outside ankles. I was forced to take a leave from work as a result of this and was confined to a wheelchair. I used una boots and numerous creams to aid in healing.

Finally in January 2001, the ulcers healed. I filed for disability through my employer and Social Security and was denied by both. I then began five months of physical therapy on my knees, ankles, and toes. I was responding well to this therapy, and I was able to return to work in July 2001. I worked part time in July, then I began full-time in August.

Donna's FootIn late August 2001, I began to experience severe itching on my ankles. My dermatologist prescribed hydrocortisone cream to help with the itching. After using the cream for about a week, a large blister developed on my right ankle. I thought this was a result of an allergic reaction to the medication and discontinued use. My physical therapist stopped my therapy because she did not want me to tear the skin off the blister. Soon after, more blisters began developing. These blisters are very large, sometimes covering the entire side of my ankle, and they are VERY painful. I have visited the University of Virginia Medical School in Charlottesville, as well as my dermatologist, several times, and they have never seen this condition with scleroderma, nor do they have a solution. I tried mega doses of prednisone and numerous ointments and creams, but nothing has helped. I have tried elevation of my ankles, but this has not helped either.

It has now been one year since these blisters started, and they are still going strong. I had to leave work in March 2002, and I have finally received my Social Security disability benefits, but I have to be reviewed in May 2003 for continued benefits. I have applied for long-term disability benefits through my employer, however, I haven't been accepted yet.

Donna's Foot 2The medications that I have tried are Penicillamine, Plaquenil, prednisone, Cardizem, minocycline, doxycycline, Sandimmune, Darvocet (for pain), and too many creams and ointments to mention.

I am thankful that I do not have internal organ involvement, but these blisters are really taking their toll. I have never experienced such continual pain. I get to the point some days when I do not think I will survive. I am hoping that someday someone finds a cure for this dreadful disease, but until then, I, like you, will continue to suffer.

If you have similar symptoms or would like to email me please feel free. Thanks for listening.

To Contact the Author

Donna
Email: [email protected]
Story posted 9-12-02
Photos of ankles added 9-19-02
LINKS
Joint Contractures
Localized Scleroderma
Minocycline
Penicillamine
Prednisone
Raynaud's
Diseases Similar to Scleroderma
Systemic Scleroderma
Ulcers (Digital)

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 Dora: Linear Scleroderma
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.