60 Minutes presents a live interview with Reggie Sorensen about losing her eyesight.
Interviewer: Reggie thank you for talking to us tonight, in our live online chat room.
Reggie Sorensen: Thank you for the welcome, it's great to be here tonight I'm looking forward to it.
Interviewer: Now we will go to the questions from our guests.
BitFuzzy asks: Reggie did you know this condition was in your family?
Reggie Sorensen: No, I didn’t know at all. I discovered it when I went to get my eyes checked.
Matthomas asks: Hello: My grandmother, my father and my three uncles all have RP; can I be genetically tested?
Reggie Sorensen: Yes through DNA you can be tested to see if you are likely to be affected.
shell asks: So happy to hear your daughter will not be affected by the illness you have - That must have been such a relief for you?
Reggie Sorensen: Yes, it was a huge relief. It's been playing on my mind for quite some time. If I had passed the disease on to her I'd be devastated and feel so guilty, so the results make me feel better.
lorice asks: Can medication fix it?
Reggie Sorensen: As far as I know, no it can't. Some have recommended a diet high in vitamin A and that's meant to help slow things down. But it's not been clinically proven. I couldn’t go on the vitamin A diet as I'm pregnant and I’m not allowed to have high dosage of vitamin A.
tstoro01 asks: I just wanted to know if treatment for this particular eye disease has had any success anywhere else in the world?
Reggie Sorensen: Yes, there are different types of RP and there is one type where they did genetic therapy in the UK and it did help a young man get some vision back. This type affects younger people and they injected genes into the eyes. I can't see at all in the dark, and with this guy they put him through a maze in the dark and he banged into it. After 6 weeks of the gene therapy he could get through the maze successfully.
Joe-ofchops asks: Hello Reggie i have some trouble with blurred edge vision how long ago did you notice and what made you notice it first ?
Reggie Sorensen: With me I've obviously been born with it and not known. What made me go to an eye doctor was when I was in training at Virgin Blue to become an air hostess. Part of the training was learning to work with people with disabilities. There was a blind lady there and she talked about what happened when she became blind and it sounded just like what was happening to me. So I went and had my eyes checked and they found it. Otherwise I would have just kept falling and tripping over and not knowing why.
rmac asks: Reggie, are the any symptoms at all to this condition? Could someone have it and not even know until it's too late?
Reggie Sorensen: Yes, because I didn't know I had it, and I had never been able to see in the dark but thought everyone else was the same. People used to laugh and say that nobody can see in the dark, but I had no vision at all in dark situations. I think I've never had any peripheral vision, but I don't know for sure. I just got along and didn't realise there was a problem. It's a bit bizarre.
Amma asks: Hi Reggie, were you told if you had discovered this condition earlier on would there have been a difference?
Reggie Sorensen: No, I wasn't told that and there isn't a cure anyway so nothing can be done now and nothing could have been done if it had been discovered earlier.
shell asks: Are you able to test your unborn baby or do you have to wait? And even if tested is there anything that can be done to reduce the damage?
Reggie Sorensen: I really don’t know, I've not thought about that. I would just wait until the baby is born and then have tests done. When my DNA came back, Mia doesn't have the disease, she is a carrier and therefore the new baby will be a carrier too. So probably the baby won't have it but their children will have it.
allycat asks: Reggie, How early can you get your children tested?
Reggie Sorensen: I don't think there's an age limit as it's a DNA test not an eye test.
shell asks: Do you know if this illness is more likely to affect females or males?
Reggie Sorensen: Because there is different types of RP, it's more common in males in all the types so far as I know. There is a chromosome in men that is the link I believe and it affects men more than women.
traceyb asks: I wanted to ask what is the name of the study for the bionic eye. My son is rapidly going blind from RP also - I sympathise and agree that staying strong is the best method. My son is only two and a half and will lose his vision before he gets to school Best of luck
Reggie Sorensen: I’m sorry I don't know the name of that study. I went there to look at the University but I don't know the name. You need to talk to your son's eye doctor, he would be able to tell you all about it and how the trials are going. I think it's only in the trial stage right now and it won't be available for about 2 years. In America they have already done it, so you never know it could be sooner. I've done a lot of research on the internet so perhaps you could look it up there and see what you can find.
simone asks: Although your daughter might not get it do they think there is a chance she could pass it to her children?
Reggie Sorensen: Mia is a carrier and the chances of her passing it on to her children are quite great. If she marries someone who is also a carrier then their children will definitely have it. But if she marries someone who doesn't there is less chance. The thing is, how will Mia know when she meets someone she wants to have children with, whether they are a carrier too. Or ask them to be checked first.
Kurt asks: I’m finding that there is little in the way of support or guidance for those who are affected by RP. Do you know anything?
Reggie Sorensen: I spoke to the people at Vision Australia and the lady there is lovely. Also Queensland Guide Dog people were helpful. I know there are groups out there, but I've not gone along to any of them as yet. Speak to people at Vision Australia and they will be able to steer you in the right direction.
Angel007 asks: Reggie, do the Dr's know what it is about the genetics that causes this? is there a single gene that does this? Or is it a few genes that cause the problem?
Reggie Sorensen: It's one faulty link. They explained it like a bicycle chain where one link is missing and it can't be fixed until they find the faulty gene. Which is why the DNA is done. They have to narrow it down to one gene and it could take years to find that one faulty gene. And as the doctor said "how long is a piece of string". There are hundreds and hundreds of genes.
Tayla asks: Do you know how you go about getting tested for the disease if it's in the family?
Reggie Sorensen: It took me ages to find out where to go, I asked my eye doctor but I just hunted it down on the computer to find someone in the genetics industry that could help me. I went to a place in Brisbane called Brisbane Genetics and I asked for it to be done. I couldn't find anyone here in Australia so they sent my DNA to Estonia to be tested. But 60 Minutes found a lady in Western Australia who could do Mia's and mine again, as well as Dale and mum and dad. But my first test went to Estonia. It's vey expensive, it costs thousands of dollars to do.
Fang-Wang asks: Hey Aunty Reg, It’s Chanelle. How long is the estimate time until you completely lose your vision? ): x
Reggie Sorensen: Everybody is different and I just don't know. It could be 5 years it could be 15 or 20 years. Everyone's body works differently.
pete asks: With things that aren't clinically proven, do you think "might as well try it, nothing to lose" ?
Reggie Sorensen: When I spoke to the genetics people, cause I was all for wanting to find the gene and even be a guinea pig for the trials. They told me not to do that but to wait until they had definitely found a cure. Of course I'd like to try anything but there is a chance of making things worse. So I'll wait until I know there is a definite cure.
millicent asks: Do you find dealing with night blindness as difficult as the loss of peripheral vision?
Reggie Sorensen: The night blindness is very hard it's a real pain. You can't see anything and you're as blind as a bat so it's really hard. It's just as bad as the peripheral vision but at least in the daylight I can see something. It stops you doing a lot of things. I avoid doing things in the dark or out at night, if I do want to go out at night I need someone with me to look after me.
Thomas asks: What sort of strategies are you putting into place in your home to make it easier for you as your condition deteriorates?
Reggie Sorensen: Well, it's a bit hard with a 2 year old that leaves toys lying around, its impossible to have a safe environment. Our house is pretty vision friendly, I bang into the walls but there's not much that gets in my way. Worst is Mia leaving her toys where I don't see them.
jaybours asks: Reggie, was it hard to adjust to your life following the end of Big Brother?
Reggie Sorensen: Yes it was very hard. It was hard to deal with how everyone knew who I was, I guess I was a bit naive going into the show cause I expected to come out and go back to my old life but it was impossible.
Laurawolf asks: Reggie, are you still in contact with anybody from Big Brother? If so, who?
Reggie Sorensen: Yes I've stayed good friends with Ben and I keep in touch with Clare, Chrissie, Patrick and Joe but I only really talk to them via email. Ben is the one I stay in touch with the most usually by phone. Everyone changes when they come out of the show and they all go off and do their own thing.
Satya asks: What is the due date for your new bub?
Reggie Sorensen: Some time in August so not far away now.
Rebecca asks: Will you have help to look after your new born baby and daughter? Will you be able to see them?
Reggie Sorensen: Dale will be here to help me, because I have to have a caesarean so I'll need help. Yes I'll be able to see them if I look straight at them and focus.
Pete asks: Reggie, I remember seeing you on TV a few years ago when they showed you training as a flight attendant. Did you get to work in this field long before your sight started to fail?
Reggie Sorensen: I worked at Virgin Blue for about 7 months. I left, but not because of my eyesight. I found I picked up a lot of chest infections and germs from all the people so thought it best to resign.
millie asks: Is there any Australian research into this condition apart from the Bionic Eye which seems to be only a benefit at a very late stage?
Reggie Sorensen: Even in the UK and America all the breakthroughs are done on people who have totally lost their vision. So in my case it's the same, they have to wait until I've almost totally lost my vision before they can take any further action.
Kristy asks: How are you finding the local community support in your area? Has everyone been helpful towards yourself and your family?
Reggie Sorensen: I don't really go out and do anything, I'm very restricted about what I can do. To be honest I don't really know anyone in my community we've not lived here long. I guess I've not put myself out there for anyone to help me as yet.
Alexander_E asks: Are you aware of any fundraising to help awareness of this disease?
Reggie Sorensen: No I'm not aware of any fundraising sorry.
Interviewer: Unfortunately, we are out of time, do you have anything else you would like to share before we finish tonight?
Reggie Sorensen: Thanks for all your questions and to those who know someone, or are affected themselves by this disease stay positive.
Interviewer: Once again thank you and goodnight.
Interviewer: This concludes our chat with Reggie Sorensen, Sunday July 5, 2009.
