Life With Proteus Syndrome

AOL Health: Do you take any medication to help with your condition?

Sellars: I have medication delivered because it's easier for me than going down to get it. I take painkillers because I have arthritis in my lower joints and obviously the muscle pain as well because of lifting so much weight all the time. I take stomach tablets because of years and years of being on tablets, [which] has messed up my stomach a little bit. I take hormone tablets because my condition affects women problems, shall we say. I take iron tablets because I have been anemic in the past, but if that has something to do with the condition I really don't know. I also take a few herbal tablets to help with joints. Obviously, I take warfarin as well because that's the blood thinner medication, so that prevents another blood clot from happening.

AOL Heath: You mentioned having deep vein thombrosis. Have you had any other health problems due to your condition?

Sellars: In 2005, a catalog of different things happened at the same time. I was on this particular medication for about 10 years, and I wasn't made aware that it could cause kidney problems, so my kidneys started to fail. I [also] had a problem with one of my legs. I just banged my leg on the table one day, and from then on it was so, so painful. I ended up going to the hospital because of this and then ended up having blood transfusion after blood transfusion because I was so anemic and on medication for the kidney failure. Thankfully, they managed to save my kidneys in a sense, so they are working as they should be now. I had complications when I was [in the] hospital anyway, so that was about five months of a stay in hospital.

AOL Health: During a documentary you did with TLC, you traveled to the United States to find out what could be done to reduce the size of your legs. Did anything ever come of that trip?

Sellars: No. I went to a surgeon to see what he thought about the possibility of amputation and also to see a prosthetic specialist about fitting me with prosthetics if I should decide to go through with the amputation. I haven't done anything about that because I've been told by quite a few doctors that the operation itself is quite a dangerous one to do. So my thought process is simply not to have the amputation until absolutely necessary, and so if my heart starts having problems due to the weight then amputation is something to be considered. At the moment my heart is fine, but in years to come that may change. It may not. I don't think anybody knows what's going to happen.

AOL Health: Do your doctors have any clue as to what's going to happen to you as you get older?

Sellars: No, they probably know about as much as I do, which is not a lot. It's just living from day to day and seeing what happens and, in the meantime, trying to keep myself as healthy as possible.

AOL Health: Have you considered anything else aside from amputation?

Sellars: I have had liposuction in the past, but that didn't work. It made the condition worse. That's not something I would ever try again, and [amputation] is the only other option doctors have given. They seem to think it's the only way to go, simply because my condition is really severe. It's not something they can treat.

AOL Health: Do you live alone?

Sellars: I do, yes.

AOL Health: Do you have any at-home care outside of your medication being delivered?

Sellars: No, that's a service they do for a lot of people anyway. I always find ways around situations. For food shopping, I order that on the Internet and the supermarket brings it to your door. So that's just a way around making life easier for myself. In terms of people coming into help me, no. I'm too stubborn. I like to do everything myself, whether it's the cleaning or the washing or the ironing or something like that.

AOL Health: Do you work?

Sellars: No. Due to the condition, working 9-to-5 would just really take it out of me physically. I do volunteer work, and that keeps me busy.

AOL Health: Are your shoes specially made?

Sellars: Yes. It used to be the National Health Service that made them, but they didn't do a very good job, so I asked a friend, a private shoemaker who lives not too far from me, and he agreed to make them. But it was just another matter then of finding the money to actually pay him because, obviously, if you have the shoes made from the NHS, they're free. But if you go somewhere else, they're not. They cost £2,000 [$3,000] to make. They're a very expensive pair of shoes. They could be very good designer pair of shoes, but they're not.

AOL Health: Can you walk without the shoes on?

Sellars: Yes. I can walk without shoes on simply because I have to. It's not as easy because one leg is longer than the other. The left leg is longer by about 5 inches. It's kind of changed over the years. It's not the left leg that's gotten longer, it's the right leg that's gotten shorter.

My right hip is tilting upwards, so as it does this the leg gets shorter and shorter and there is no way to stop [it]. It will only stop once the hip bone fuses and does not work anymore. There is no time frame on this. It will happen when it happens. There is no solution as a hip replacement could well cause more problems, like shattering my bone as they perform the replacement.

AOL Health: Are there some days that are worse than others for you?

Sellars: Yes. There can be a number of factors that can cause that. Maybe I did too much walking the day before or I haven't slept too well. The weather can have an affect on how mobile I am. If it's raining and damp then that affects my joints more so than if it's warm. So living in the UK isn't the best place to be really.

AOL Health: How far can you walk on a typical day?

Sellars: It's difficult to say. It can differ from day to day. Some days I can get from my bedroom in my flat to my car without any problem, which isn't that far. But then other days, I can really take an effort to actually do that. So it's kind of a daily thing as to how far I can actually walk.

Continued: Relationships and Looking Forward

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