My son went off to college in the fall of 1998. When he returned a month later, his face had started to thicken by the bridge of his nose. Soon his face was thick by his cheeks and eyes. He went from doctor to doctor.
In December 1999, he was hospitalized with a heart problem: multifocal atrial tachycardia.He kept going to different doctors. An x-ray and CT scan showed his lungs were beginning to thicken.
In September 2000, he was hospitalized three times for this heart problem. He would wake up in the morning and his resting heart rate would be about one hundred thirty beats per minute. He is now on a heart medication that makes him agitated at times. His face continues to thicken. He has had two biopsies that came back confirming scleredema.
|1998: Before Scleredema||2000: With Scleredema|
This is hard on all of us because his older sister had a rare brain tumor in 1981. She has many problems caused by radiation damage. My son's doctors want to try chemotherapy and then irradiate his face. But after seeing the problems my daughter has had from radiation, I do not want to subject my son to that.
Since Christmas of 2000, the left side of my son's face thickened even more.
On February 9, he was told he has cataracts in both eyes. He had just had an eye exam in December, and his eyes were fine.
The cardiologist said the next time that my son's heart beats irregularly for more than several hours, they will open up his heart to find out what is wrong with it.
This is an update on my son, Michael, who has had scleredema since the fall of 1998. He is doing well on heart medication. He is teaching near Atlanta, Georgia. The thickness of his face has improved some. He is planning on getting married in the summer of 2007. He has been doing well these last couple of years.
Email: [email protected]
Story updated 2-14-01
Story updated 12-1-01
Story edited VH1: JTD 9-9-03
Story update edited 12-22-06 JTD
Story update posted 02-08-07 SLE
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Photos of Scleroderma
Radiation and Scleroderma
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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!
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.