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Barbara H: Generalized Essential Telangiectasia

I have never met anyone with my complaint and as complaints go I realize I am lucky,
but I must admit I wish it was not me with the complaint.

I have been diagnosed with telangiectasia. When I was fifteen my local doctor told my parents it was because I sat too close to the heater and burnt my legs. It was only on the feet and backs of my ankle. Back in 1960 this sort of complaint was unheard of and everyone believed it, but I never remembered doing that.

A few years later when I was a member of the armed forces the specialists tried a number of treatments, packing my legs in CO2 slush and burning them. I stopped it as the treatment was worst than the complaint. It was unsightly mainly and getting into a bath was hopeless as the water needed to be so cool to put my feet in that the rest of my body was freezing. So I ignored the problem and wore long slacks and skirts.

When I turned forty it started on my hands and traveled up my arms. It is now on my breasts, stomach and back. Where I wear my watch it is not blemished.

About five years ago some specialists at St. Vincents Hospital had a symposium and I was one of the subjects but they did not have anything to assist me. Laser could help but was very expensive and I am a working single parent and could not afford the time off work or the expense. I was happy to offer my assistance and let them study me as I thought that if they could find an answer for young people not to have to live with the 'red rash' I was happy to oblige. I have never met anyone with my complaint and as complaints go I realize I am lucky but I must admit I wish it was not me with the complaint. No one really knows much about it.

I have now become anemic and the hematologist is looking into whether the telangiectasias could be causing this problem. I would love to hear from any other similar cases. I use makeup to cover the blemishes in summer but it does not always work too well.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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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