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

Lama: Morphea

"It felt great having someone know about it
and not think that it's a weird thing."

Single Rhodedendron for Lama by Sherrill Knaggs I never thought of sharing my story, but after reading the other stories I was really touched and got the courage to write about my own experience. I am twenty years old and I was only eighteen when the whole thing started. My mom noticed a small spot on my back, but we did not think it was anything important. But I was worried when it started getting larger and darker in color.

As would any eighteen-year-old girl, I hoped that it would not appear somewhere where other people might notice it. I got really worried when a similar spot appeared on my thigh and another one next to my knee.

I went to many doctors and I hated them all because I wanted to hear something positive and did not want to get disappointed. All the doctors told me that it's clear that what I have is Morphea. They did many tests to check that the Morphea would not develop into something major. They told me I do not need to worry a lot about it. I tried a lot of medicines but nothing worked. I got really depressed and could not talk about it to anyone. The only people who knew about it were my family. None of my friends ever saw the spots.

One of the things that I really worried about was my boyfriend. I was really terrified that he might get disgusted by the way the spots looked. One day when I was really depressed, I got the courage to tell him. I was shocked at how easy he took it. It felt great having someone know about it and not think that it's a weird thing. I know the spots are very noticeable but he acted as if they were invisible and he kept saying that no one would notice them. I know he was saying this because he wants to make me feel better and he did!

What I am trying to say is that I really got over my severe depression with help from my boyfriend. It makes me feel great to know that he wants to marry me and spend the rest of his life with me as if these spots weren't bothering him at all.

I would love to receive e-mail from anyone telling me about any treatment that showed some improvement. I will be very thankful. I really want to know about any treatment, because I still cry myself to sleep sometimes when I think about it. I worry all the time that a similar spot might appear on my face or on a place that I can't hide. Just thinking about that possibility depresses me. Thank you for reading my story.

To Contact the Author

Lama S.
Email: [email protected]
Story posted 09-12-02
LINKS
UAE Support Group
Morphea

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 Lancia: A Friend of a Morphea Patient
 
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.