What If Your Legs Couldn't Stop Growing?
Categories: Family Health

If you happened to spot 34-year-old Mandy Sellars driving, you wouldn't look twice. You may catch a glimpse of her short blonde hair -- a hint at her spunky personality -- or her thinly toned arms. But what you may not notice is that her car is specially equipped for her to drive with her hands rather than her legs.
Born with a rare condition, Sellars' petite 84-pound frame is supported by abnormally large legs that weigh 210 pounds. Her doctors, who are still baffled by her disorder, have tentatively diagnosed her with a form of Proteus syndrome for lack of a more definitive explanation. Made famous by the case of Joseph Merrick, also known as "the elephant man," Proteus syndrome affects one in 1,000,000 births and causes atypical growth of the bones, skin and head and can result in vascular malformations and partial gigantism.
Once able to walk without aid, Sellars is now dependent upon crutches or a wheelchair to get around her home. Her condition has worsened over the years, causing Sellars to endure crippling paralysis, months of hospital stays and the curious stares of children and adults alike. Reliant only upon government and delivery services, she lives alone and has no caretakers to help her out of bed in the morning, do the wash or scrub the dishes -- activities that take her hours instead of minutes. And as her legs continue to grow, dwarfing her upper half, doctors can offer little explanation or foresight into the future.
AOL Health had the opportunity to interview Sellars about her condition.
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Effects of Proteus Syndrome
AOL Health: Can you explain what effect this condition has had on your body?
Mandy Sellars: The best way to describe it is from my waist down my limbs are very, very large. I would guess maybe three times larger than the average person's. My right foot is just very deformed in a sense. It looks a lot like an average foot, really, to me, but it's just a lot, lot bigger than the average foot.
With the left foot, that's what they call a club foot, meaning it faces backwards. But that's still big as well because of the condition or whatever it is that's going on from the waist down. Because any kind of fat is stored from the waist down, everything from the waist up is very, very thin. I have muscle, but I don't have a lot of fat on my upper body because of whatever is going on internally.
AOL Health: Were you born with this condition?
Sellars: Yes.
AOL Health: Is it defined as Proteus syndrome?
Sellars: No, I've been to various doctors. And some say it's Proteus syndrome, and some say it's definitely not Proteus syndrome. So at the moment, I'm not really sure what it is. My own personal opinion is that I have elements of Proteus syndrome within my condition, but maybe it's something else as well as Proteus syndrome, but I don't know what that is.
AOL Health: Does anyone else in your family suffer from something similar?
Sellars: No. Nothing at all. I'm the first person to have anything like this.
AOL Health: Has your condition worsened over the years?
Sellars: Up until I was about 30, things didn't really get that much worse at all. I was still able to walk without the aid of crutches. I've always used a wheelchair because of the weight of my legs. When I was 28, I suffered from deep vein thrombosis, which is a blood clot. And that initially paralyzed me from the waist down for about eight weeks, but then the feeling started to come back. It's never come back 100 percent, but it came back enough for me to learn to walk again, but I have to use crutches now because my sense of balance and feeling is not as good as it used to be.
Obviously, now my legs are getting heavier. And there's nothing I can really do, so obviously as they get heavier it's going to be harder for me to actually walk and get around, really. Luckily, I had a test recently on my heart, and that is absolutely fine. The weight isn't causing any problems, which was a surprise, but a good surprise.
AOL Health: What is it in your legs that continues growing?
Sellars: I won't say it's mostly fat, but obviously fat is in there. Anything that's in the legs, the bones, the muscle, the tissue, the ligaments, the fats, everything's bigger. But obviously a lot of it that's getting bigger at the moment is fat.
AOL Health: Since some of it is fat, do you have any control over how big your legs get?
Sellars: With food. Obviously, if I ate pizza every day that's going to put weight on anybody. But even just sticking to a healthy diet, it doesn't seem to make an awful lot of difference. The weight still goes on my legs.
AOL Health: Can exercise help?
Sellars: I do lift weights occasionally to build up the muscles in my arms so it makes walking with the crutches easier. Just walking around in general is quite a lot of exercise for me. It gets my heart pumping.
AOL Health: How much do you weigh and how much of your weight is from your legs?
Sellars: My weight is about 21 stone [294 pounds], so I'm guessing the majority of that is my legs. Maybe my upper body would be about 6 stone [84 pounds], so my legs are the rest.
Continued: A Catalog of Complications








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