Cissie - Interview 34

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

More about me...

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.

 

 

Cissie sometimes asks "why me?" but tries to make the best of her life.

Do you ever think about the fact that the condition is hereditary?

 

Sometimes, but not that often. I do ask myself why me? Why do I have this? I do think that it’s not a nice condition to have. But it’s what’s thrown on us and we have to deal with it, with our God’s help and with aid and medicines, we just have to get on with it and think positive. So I put that under my e-mail you probably saw. But sometimes it’s easier to preach that than to actually believe in it. But I try my best to cope. 

 

And in answer to your question, I don’t think about it that much that it’s hereditary but I don’t blame my parents for it at all. Because it was given to us and we have to just make the best of it. I am very grateful to my parents for all that they do for me as well. I do appreciate it. 

 

Cissie is very conscious of the impact her condition has had on her parents' life and feels unsure whether she would want a partner to look after her.

What about relationships? Have you had relationships?

 

No.

 

Would you like to?

 

Maybe in the future, but at the moment I’m happy. I don’t know. It never really interested me until recently, but I don’t know. I don’t want to like get married and then having them to take care of me or and I don’t feel comfortable to have children and I don’t want, I don’t want… it’s because of my back going through the pregnancy would be no good, so, I don’t know. I’m in two minds about getting married *and I don't think I'd be a good mother.* (added by participant) 

 

Did you say that you wouldn’t, you wouldn’t feel comfortable with a husband looking after you or you would?

 

I wouldn’t. I don’t… maybe I would but at the moment I don’t, I don’t want them to be burdened with looking after me. I know I might have a PA – a personal assistant but would that be right? Would someone be happy? I don’t know, to be married to someone that, you know, you know. I don’t know, I can’t tell.

 

In what ways do you think, you having this condition has affected your parents?

 

In a lot of ways. They don’t go out much on their own, because they’re worrying about me. They worry that they have to give me medicines a lot and treat me with the peg, and having, and seeing me unwell, if I’m unwell, and can’t be bothered taking, going through with me with operations. When I’m nervous, they’re nervous of course.  It’s, they can’t go away on their own if they want to, because of me. 

 

I do have a brother as well who’s married. And I think his life was affected as well by it, because when I was younger I was a lot in hospitals with chest infections and things like that. So it wasn’t a very good thing for any one of us.  He is helpful and caring as well. He’s qualified as a doctor, but he’s still specialising. [laughs] And going through the system. 

 

But they are helpful. Sometimes I go and stay with them if my parents are invited out somewhere, and when  my grandmother died a few years ago, and my dad went, my mum was already in Israel, because that’s where my grandma lived and my dad went out for the burial and he went on the Thursday and then came back on the Monday and I stayed with my brother then. So they are helpful.

 

I don’t like asking them a lot, but because again I don’t want them to feel that I’m a burden on anyone. But they are helpful. I am glad, I happy to have good brother like that. And my sister in law’s excellent. When my mum’s away she sometimes helps with giving me a wash, because I can’t do it myself so… or inviting us for meals, me and my dad. So they are good. And my nephew and nieces are adorable [laughs]. And they try to help giving me medicines when I’m there. Yes. They are adorable.

 

Cissie finds that consultants sometimes talk to her parents rather than to her.

So how would you describe your experiences with health professionals?

 

Variable. Sometimes they talk to me, sometimes they don’t. But on the whole they do talk to me as a person. But the way they, I had my peg changed recently, and they didn’t give us, any information about it. Because they put in a temporary one, I’m waiting now for the permanent one. So there were real communication difficulties with that. But on the whole okay. You know, variable.

 

When you say sometimes they don’t talk to you, do you mean they talk to your parents?

 

Yes.

 

Why do you think that is?

 

Maybe they just don’t think I’m capable they don’t want to frighten me or there isn’t… they don’t think I understand… I don’t know. It depends on which train of thought they come from. The more mature doctors think more of themselves, and the younger ones, the not younger ones, the up and coming ones are more open and more understanding.

 

How does it make you feel if they don’t talk to you?

 

It used to upset me, but I’m used to that. It’s more… it’s okay. I listen. And if I understand, I understand. And if not I ask my parents when I come home to verify things.

 

Do you find that happens with other people or is it just doctors?

 

Sometimes with other people, but mostly with doctors. 

Cissie would like screening for Familial Dysautonomia introduced because 'it is not a nice life for anyone'.

Is there anything we haven’t talked about that you think is relevant to your experiences?

 

As a result of my experience I do hope that in England they do take on screening for FD because it’s not a nice life to have for anyone. And I think people should be educated about these conditions so that they know what is out there, and this is one of the things, why I’m happy to do this, so that people know what life is like with these conditions. And hope that they do get tested and if they do know anyone that has similar symptoms then they should test definitely. Or think that it might be this, because it’s no joke, diagnosis is important if you want the right treatment.  

Cissie finds it helpful talking to other people with Familial Dysautonomia.

And I’m involved with the, with the society that’s here. The Familial … DSGB and I do have contact with a few people, a few of the sufferers as well. Either on the phone or we meet up occasionally.

 

And do you like that?

 

Yes. It’s okay. To begin with I wasn’t that keen on it, but now I am happy.

 

Why weren’t you so keen on it?

 

I don’t know. I just, I didn’t think that we… beside FD I didn’t think that we had much in common but we do help each other and talk to each other about what similarities we have and…. Things like that.

 

Is there much similarity?

 

Like our walking, scoliosis, pegs. They are similar but people, some of them are more independent than us, than me. They go travelling with a carer on planes, which I wouldn’t do. I’m not a very good flyer. And they’ve written books and things like that, which I haven’t done. Well I’m not planning to write anything. But there are different levels. FD varies from person to person. Sometimes people have more chest problems or spine problems than other people. 

 

Cissie has good days and bad days. On bad days she can feel quite down, on good days she likes to go out.

Well I suffer from familial dysautonomia, it’s a Jewish genetic disorder, as you’ve probably gathered. It’s a rare condition. My experience of being a sufferer has had ups and downs. It’s like going through an obstacle course. You don’t know what’s going to come next, with this condition. You can have good days, you can have bad days. I do have a degree. So I did achieve some things in my life. And I’m a volunteer in an organisation called Active Volunteering for Disabled People. It’s based in [town]. 

I’m also involved in a website for people that are disabled in the Jewish community, I set up with a friend. And so that keeps me a bit busy, and so I’ve got appointments from time to time. And they can vary in lengths and times and where they are

 

And I just get on with it. As I said there are good days and bad days, and the bad days I feel nauseous quite a lot or just feel down. And the good days I can do things, like going out. So, yes, I’ve also got a carer twice a week. So we do go to the gym together and I do exercises. And I also go to [place name] with her sometimes and I hope to go to the cinema maybe and take things from there. 

But it also depends on how I am on the day whether I do go out into town or stay in.