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

Irina: Polymyositis

I remember being very scared.

Butterflies by Ione Bridgman, ISN Artist My name is Irina. I am twenty-two years old. When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed. Being at that young age I didn't understand exactly what was happening.

My mom is a nurse so she immediately noticed something was very wrong. At that time I was still in hospital due to the operation so we went to see a neural specialist. At first they didn't know what exactly was going on. I was sent to do some tests including a biopsy on my arm.

I remember being very scared. My whole family was terrified. Finally, after weeks of tests, I was diagnosed with polymyositis. The doctors put me on corticosteroids therapy, combined with immunosuppressive medications.

One month in my therapy I gained 45 kilos. I was devastated. The doctors also sent me to physical therapy.

A year or two into my disease, I noticed my fingers were not growing as they should have. I told my mother and we went to see my doctor. As a side effect from the corticosteroids, my arms were weak, and to this day I get tired very easily. Things such as typing this story is very tiring.

I was sent to have my arms treated with liquid nitrogen, which is a very painful process, especially for an eleven-year-old girl. But it didn't result in success.

Now I am twenty-two and I have no muscle weakness or pain. My illness is now in remission. Now I only have problems with my immune system. I am very prone to allergies. I am allergic to milk and dairy products, cereals, nickel, eggs, dust, cats and dogs, and even bread.

But I learned to live with it. I am so happy that my ordeal with the illness is over. Now I have a happy life, a boyfriend for four years who is very supportive and understanding, and a loving family. I am studying to be an English teacher. I also have a part-time job, and a lot of friends. I guess all's well that ends well.

To Contact the Author

Irina
Email: [email protected]
Story edited 09-10-07 JTD
Story posted 10-15-07 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Thompson Devlin
LINKS
Polymyositis
Polymyositis Personal Stories
Autoimmune Diseases (Main Menu)
Medical: Diseases and Symptoms

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 Iris: Family History of 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.