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

Neelam: Systemic Sclerosis


Red Hibiscus for Neelam by Sherrill Knaggs, ISN Artist I am forty years old. For thirty-two years I did not have any health problems. I never even suffered from fever. But in 1998 I joined a slimming center to reduce my weight. They started acupuncture and some exercises like sauna bath, and homeopathy medicine was also given to me.

In December 1998 my right pointer finger started becoming blue and was hurting a lot and, at last, it appeared dead but then also it was hurting at night. I went to many hospitals. Everywhere I was being told to undergo some or the other tests and even I was told to undergo angiography but at the end everyone said to me that I will have to cut off my finger. But I did not want to do that.

Then I got a doctor who was a cardiovascular surgeon. He told me that he would operate on me after two days and the finger will be saved. So, after two days I had a cervical sympathectomy. I was told that I was suffering from Raynaud's and I will have to take care of it my whole life. I was stunned to listen to all this. I do not know where I got this disease. I really want to know about it, so if anyone knows about it, please tell me.

So, after the surgery, my finger was okay. A few days later, I was vomiting all the time whenever I had food. Soon, I came to know that I had pleural effusion. I think that was the consequence of that operation. So, again I went to many hospitals.

One doctor started giving me the tuberculosis medicine (plaquenil). But my vomiting did not stop, so I went to another hospital. They said that I will have to undergo another operation on my lungs which was a major operation. I was told to get twelve bottles of blood. But I refused that operation and went to another doctor. He stopped my tuberculosis medicine and gave me some other medications, and I was alright after that.

But again in winter my fingers started getting blue so I have to wear gloves and I am really afraid of touching water. But we cannot live without water. I want to get rid of this problem. If someone knows the solution for this please tell me.

After this one day my friend told me that my skin on my face is getting white. So, I consulted a skin specialist and he told me that I am suffering from systemic sclerosis. I was very depressed. My skin started stretching and my face was changed totally. My teeth came out. I could not even recognize myself. My finger skin was also stretched. I, again underwent some more tests and the doctor started giving me d-penicillamine, one in the morning in summers and one in the evening in winters. Then after one month he started giving me Methotrexate which was given to me for approximately one year. Because of that my hair also fell out. Now I have very little hair.

My looks are horrible. I think I have reached sixty at the age of forty. I want a permanent solution for this problem. Can anyone tell me the solution and how many years I can live with this problem? I will be very thankful if someone gives me solution to this. This is my story's end.

To Contact the Author

Email: [email protected]
Story edited 05-20-05 JTD
Story posted 05-27-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Ineffective Treatments: d-penicillamine
Pleural Effusion
Microstomia (tight skin on face)
Sclerodactyly (tight skin on fingers)
Teeth (dental involvement)
Systemic Sclerosis
What is Scleroderma?
PDF Brochure: What is Scleroderma?

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 Nettie: Systemic Scleroderma with CREST
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!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.