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

Mandy: Mother of a Morphea Patient

The second dermatologist we saw was so pessimistic that I could not stand to expose my daughter to more than the initial visit with him.

[Caterpillar] My daughter was in the eighth grade, busy with end of school year activities and in training with her swim team, when she noticed a hard area on the right side of her neck.

She had an upper respiratory infection weeks earlier with some swollen glands, but if this was still a swollen gland it had persisted for too long. It was time to see the doctor.

The doctor examined the area and gave her an antibiotic to clear up her "adenopathy". When the area had not improved after two weeks, he referred her to a surgeon for a skin biopsy.

The surgeon examined the area and questioned my daughter. "Was she positive that she had not burned her neck with a curling iron?", for by now the area looked much like a scar — pale and shiny. The biopsy was performed and the results returned as "nonspecific dermal irritation". We were given a steroid cream to apply to the area and after four weeks there was no improvement. The surgeon referred us to a dermatologist.

Currently, we are seeing our third dermatologist. My daughter is in tenth grade, still busy at school and still swimming with the team. The first dermatologist we saw was forced to retire due to illness, but did establish a diagnosis of morphea. The second dermatologist we saw was so pessimistic that I could not stand to expose my daughter to more than the initial visit with him. The current practitioner has my daughter using Vitamin D cream and ointment on her lesions. The entire right side of her neck and jaw is now involved.

My daughter worries about how many more lesions will appear. But I do not believe that she dwells on it. She has many nonspecific aches and pains which make me wonder if they are related to her Morphea, or are they merely to be expected in an atheletic teenager?

I read many articles on the Internet about possible causes of Localized Scleroderma. No one has ever offered to do any kind of blood tests on my daughter, and when I suggested doing a test for Lyme Disease to my family physician he looked at me as though I was totally deranged. I was also told that I should not believe everything that I read on the Internet.

So, we wait to see if the newest cream or ointment will have any effect. And we wait.

To Contact the Author

Mandy
New email address needed 08-01-06 SLE
Old Email Prefix mandy
Story posted 11-4-00

Story Artist: Shelley Ensz
LINKS
Caregiver Stories
Morphea Scleroderma
Juvenile Scleroderma
Go to Mani: Son of Systemic Scleroderma 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.