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Myrianisa: Daughter of a Severe Scleroderma Patient
At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, Pulmonary Fibrosis and Fibromyalgia.

Bullocks Oriole by Judy Tarro, ISN Artist My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia.

She has had five fingers amputated due to severe digital ulcers. Her health has severely declined in the past year. She is scheduled to have two more fingers amputated this month. Hyperbaric treatment has helped with the healing after surgery, but has not helped to prevent future ulcers.

She is now on three liters of oxygen constantly. I hope to find something to help her. She is on a variety of medications including coumadin, pletal, prednisone, and procardia.

Her condition is severe and not getting any better.

To Contact the Author
Myrianisa
Email:Withheld by request
Story edited 11-17-05 JTD
Story posted 01-27-06 SLE

Story Artist: Judy Tarro
Story Editor: Judith Devlin
LINKS
Digital Ulcers
Fibromyalgia
Lupus
MCTD
Pulmonary Fibrosis
Raynaud's
Raynaud's Stories
Scleroderma
ISN Artist: Judy Tarro
Judy Tarro, ISN ArtistJudy Tarro, ISN Artist, created the digital photo to illustrate the story on this page. She is also owner of SD World website and email list.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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 !
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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