Above: Leanne, Rascal and Leanne’s Mum Jenny
Interviewer: Grant J Everett
Graphic design: Virginia Eastman
LEANNE developed a dangerous disease at a young age, one so rare and deadly that only a handful of other Australian children had it. Leanne is the only member of that small group to survive. She shared her story.
PANORAMA: If somebody asked you to describe yourself, what would you say?
LEANNE: I can be shy at first, but once you get to know me, I can be opinionated (laughs). I love music, arts and crafts. But my main hobby is gardening. I always do gardening with my headphones in. I’ve spent a lot of time on my own since being diagnosed with my illness, linear scleroderma, so I do a lot of reading. But I’ve also got my dog Rascal to keep me company. She’s an adorable long-legged staffy, and I rescued her when she was 6 months old. She’s by my side all the time. I was thinking of taking her to the hospital for pet therapy because she’s really good with people. I’ll have to take her through tests to make sure she won’t bite anyone, then I can bring her to Cumberland as a companion dog so everyone can pat her.
P: So are you a part of any groups in the community? A church, a book club, a writer’s group, the Hell’s Angels?
LEANNE: (laughs) Yes, I’m a part of Cumberland fellowship church group on Wednesdays, and I also attend a service there on Sunday morning.
PANORAMA: Pets are very healing, especially dogs. There’s just something about them. So Rascal is an indoor dog?
LEANNE: Yup! We even sleep in the same bed (laughs).
PANORAMA: Have you had people in your life who had a profound impact on you?
LEANNE: Lots! Mum would be the main one. I find inspiration in how strong she is, and also my grandfather on my Dad’s side. He took me under his wing as a child and taught me everything he knew.
PANORAMA: You identify as a person with physical disability. Could you tell me about that?
LEANNE: I have linear scleroderma, an autoimmune disease. I’ve had that since I was six, but I wasn’t diagnosed until eight. It’s a sister disease to Lupus, and there’s not much known about either of them. People with scleroderma struggle to produce their own body heat, so we get very cold in Winter. That’s why the sunflower is the logo of scleroderma.
I also have Raynaud’s phenomenon, so extremities like my feet and hands are affected by the cold. Sometimes I’ll wake up in the middle of the night freezing until I get into a hot shower. Sometimes I’ll be so cold that I can’t even get the shower on, and I’ll have to call mum in the middle of the night. This will be better once I move into a wheelchair-accessible place. I’ve put down for Westmead so I can be close to the hospital, because I know that I won’t be able to drive forever. As I am transitioning into a wheelchair, I want to be within scooter distance to the hospital.
Normally, scleroderma causes your hands to become clawed, like with bad arthritis. There are lots of pictures on the Internet called “clawing of the hands”. My doctors can’t believe that my hands aren’t clawed. I believe that being on crutches since eight stopped it travelling down my arms.
PANORAMA: You mentioned that your condition can often be deadly. What kind of odds have you beaten by surviving?
LEANNE: Linear scleroderma is a rare condition as it is, but to have it as a child is even rarer. It’s more of a women’s disorder, and is extremely unusual for men. There were six of us with childhood scleroderma in the whole of Australia, and we used to have a meeting once every two years down at the old Camperdown hospital.
LEANNE’S MUM JENNY: It affects everyone in a different way. It doesn’t have a pattern. It could affect any organ in the body, any limb.
PANORAMA: Does that mean it can be hard to diagnose? Because it’s not standard?
JENNY: That’s why it took two years.
LEANNE: They had to send an interview tape over to America. When the result came back as scleroderma, that was the first time we’d heard of it. But that time I’d already fought it for two or three years, and it had already ravaged my left leg with ulceration, which is why I needed to have it removed. It’s starting on my left hand, and if you look at these scars, they look like burns. It ends up really waxy.
Mine only affects the left side of my body, and it’s in my brain, not my genetics. This means it won’t be passed down to any children I have. My sister has had partners ask whether there was a risk of her having a child with scleroderma. You know, is it hereditary? She gets quite upset about that. But I told her that it was his right to know whether we have flaws in our genes.
PANORAMA: Do you feel your condition has prevented you from doing what you want to do in life?
LEANNE: Not really. I come from a big family, so I always had a lot of understanding from my cousins and my sister. I’d get discouraged because when I’d play as a kid I’d run out of breath, but mum would reassure me that I can stay on the sidelines and still be involved. Like, you can be a cheerleader, or the umpire. She even said I could do wheelchair sports. So no, it hasn’t.
One of your interview questions asked whether the physical disability or the mental disability is harder to manage. I had to think about that one! When I’m off my medication and I’m elevated and I’m out of it, I feel great, but apparently I can be quite nasty. I felt like I was Superman and could take on the world. That’s why I originally connected up with Cumberland 18 months ago. My family was worried about my behaviour after my father passed away. I’ve since been diagnosed with schizophrenia.
It’s harder with a mental disability, because you’ve got to have the right headspace to get anything done. I grew up with a physical disability, and kids are just so resilient. They really are. I was more worried about the effect it was having on my family, rather than myself.
PANORAMA: Have you encountered any difficulties from people having a misunderstanding about your condition?
LEANNE: Yeah, you get that. Some people think, wrongly, that it’s contagious. I remember one taxi driver, he was a bit freaked out. I could tell. So I leaned over and I touched his arm, and said “I’m not contagious.” (laughs) And he started laughing. He told me I remind him of Steady Eddy.
PANORAMA: He’s a champ. I love Steady Eddy.
LEANNE: There’s also a misconception that because I’m missing a leg I’m also missing part of my brain. So people tend to talk slowly to me sometimes, like, “Are you okay?” And I’m like, “Yeah, I’m fine!”
PANORAMA: What helps you soldier on?
LEANNE: Mum comes around every second day. My sister takes me out once a month for dinner. And my doctors help, and so does the Cumberland chapel group. And Rascal! Rascal gets me exercising. As you know, with the medication you tend to put the weight on, and you don’t feel like doing too much…other than what you HAVE to do.
I’m getting out more and more, which is great.
PANORAMA: I think we’re going to need a photo of Rascal…what’s your housing situation?
LEANNE: I live in a one-bedroom department of housing place at Merrylands. I originally moved out with a boyfriend, but that didn’t work out. I don’t mind it, because I like my own company.
PANORAMA: Are you planning on changing your housing situation?
LEANNE: I’m looking to change, but only because I have steps at my house and I’m going to start using a wheelchair. I’m transitioning slowly, but I will need a wheelchair accessible house. It can take up to two years, but that’s fine. We planned and allowed for two years in the timeframe.
PANORAMA: Would you consider yourself creative?
LEANNE: I would, actually. I like arranging flowers. I started a little business on the side doing floral arrangements.
PANORAMA: Is there something in life you’d like to achieve? Some sort of goal?
JENNY: Yeah. Win Lotto!
LEANNE: I don’t play Lotto! I think it’s a scam. But mum’s always hoping that she’s going to win, God love her…
I have at times thought about having children. I love kids, but I never saw myself as a mum. A couple of friends from high school have children now, and I’m the go-to for baby sitting. I love it when they call up and ask, “Can you babysit the kids?” And I’m always like, “Hell yes! Thanks for asking!” I have six Godchildren, and one weekend I had all of them at my house. Everything went fine, so I’m sure I could handle it. But before I make my decision I want to volunteer at the local day care centre for a while.
PANORAMA: You have a licence and drive without any assistance. What did this involve?
LEANNE: I waited until 24 before I started driving because I didn’t trust my motor skills. So my sister or parents would drive me around. My ex started taking me for lessons and got me through it. I filled out the logbook and did six private lessons until they were happy with me. I haven’t looked back.
PANORAMA: I’d imagine it gives you a degree of freedom you don’t have otherwise.
LEANNE: It really does. Mum only lives a suburb away, so it’s always good to just pop in and be able to get home without having to be dropped off. I can go to the shops, and take Rascal to the dog park. Rascal loves that. She has a little seatbelt and everything. I think I take better care of her than I take of myself (laughs).
PANORAMA: How can I learn more about scleroderma?
LEANNE: While my sister was in America she bought a book for me from the Scleroderma Foundation. It’s called “If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses.” It was written by Linda McNamara and Karen Kemper.
Above graphic design by Virginia Eastman.