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
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