Jewish Health

Cissie - Interview 34

Female

Brief outline: Cissie was born with Familial Dysautonomia, a hereditary condition which affects the nervous system. The condition has caused Cissie to experience considerable health issues over the years.

Background: Cissie is a voluntary worker and lives with her parents. Ethnic background/nationality: Jewish

Audio & video

Cissie suffers from Familial Dysautonomia (FD) which is a progressive genetic disorder that occurs in Ashkenazi Jews. The condition has caused Cissie to experience considerable health issues over the years. She describes her experiences as “going through an obstacle course” as she never knows what is going to come next. Cissie describes how she has good days when she can go out with her carer to the park or shopping, and bad days when she feels nauseous or just down. Three times a day she uses a nebuliser and oscillating vest to help reduce phlegm. Over the years Cissie’s eyesight has got worse and she has scoliosis and kyphosis. Five years ago she had a gastric peg fitted which means she can take in top up feeds when she doesn’t want to eat.
 
Cissie has regular appointments with various consultants and sees a counsellor once a month. She has some contact with other people with FD and is involved in the support group DSGB. Two afternoons a carer comes to support Cissie which works very well for her.
 
Cissie graduated with a degree in Health Studies and has since helped her friend to set up and maintain a website for disabled people in the Jewish community. She also works as a volunteer one day a week and goes to the gym regularly. Cissie is currently living with her parents but says she is thinking about independent supported living in the future.
 

 

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