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Lynsey: Daughter of Patient with Scleroderma and Lupus

I think one of the hardest things about all this is that my children may never really know my mom like I do.

Pink Daisies for Lynsey by Sherrill Knaggs, ISN Artist Hi! My name is Lynsey. I am twenty-four and have two children. I have a three- year-old little girl and a five-year-old little boy.

I think one of the hardest things about all this is that my children may never really know my mom like I do. My mother has scleroderma, lupus,and Raynaud's and I think it is also call CREST. I came to this web site because I do not know a lot about my mom's illness and I am trying to learn more about it. But so far I have not heard any stories that are like my mom's.

She is forty-seven and has been ill for as long as I can remember. She has gotten a lot worse in the last seven years or so. She has had all but four fingers amputated, all of her toes on her left foot and her right leg up to her knee has been amputated.

Every time she has surgery she does not heal well and she gets an infection and normally has to go back to the hospital to get it redone or get the doctors to do some more work on it.

I remember when I was younger, her fingers would get really cold and she would have to keep heating pads on them. Eventually they turned into sores and then she would have to get them amputated—one finger after another, then her toes. Her right leg was amputated because she had a blockage in it and it was not getting circulation.

I can't help but think will it ever stop?

She also has esophageal stricture. She has holes in her esophagus and she also has to go every six months to get it stretched out because it gets hard to swallow food.

She has good days and bad days but for the most part every time I am around her she has a very positive attitude, but I know she is in a lot of pain.

It is very hard because she was able to take care of me when I was young but there is nothing I can do to help her. I would love to hear from someone that has a similar story to this. I am trying to learn as much as I can so that I can understand it more. But nothing I read is like my mom's condition.

To Contact the Author

Lynsey
New email address needed 08-06-09 SLE
Old Email Prefix: Jsclsmith
Story edited 11-05-05 JTD
Story posted 11-11-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Amputation
Caregiver Stories
CREST
Esophageal Stricture
Lupus
Raynaud's Stories
Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

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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