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Sue Ann: Mother of a Son with Scleredema

Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke. This is a very rare disease. Up to 1965, only two hundred twenty-three cases of scleredema had been reported worldwide.

Macaw by Nolan LaTourelleMy 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
Before Scleredema Photo photo

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.

~ Update 12-22-06 ~

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.

To Contact the Author

Sue Ann
Email: [email protected]
Story posted12-10-00
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
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Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

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!

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!

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