Living With Zero Body Fat | Inspirational Lives | BBC Studios

Despite the myriad of issues that come with having one of the rarest conditions in the world, cyclist Tom Staniford astonishingly dedicates his life to create a community of support for people just like him.

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I don’t process fat in the normal way I have a condition that’s so rare I’m will in 584 million people have a tendency to think that having no body fat as a cyclist must be great and it be a tremendous Advantage but the reality is that it’s a big disadvantage I’m Tom Stanford a passionate cyclist and I have mdp syndrome I rode for Great Britain as a par cyclist um I was actually the champion in 2011 mdp basically stands for mandibular dysplasia with deafness and ferid features because fat is so important for so many different biological processes the fact that I can’t process it normally has a terrific knock on effect in lots of different ways the mandula displasia basically means small draw lots of overcrowding in the mouth with teeth as you can see my ear ears are functionally fine the problem is I’ve got faulty signal between the brain and my ears I didn’t actually get hearing age until I was about 14 people are reticent to to wear hearing age because of the the kind of the negative impression that all if you only old people have hearing is and that’s just simply not true the prid features sufferers tend to look much much older than they are just because we have no fat Under the Skin So we always look a little bit guned and wrinkled another one of the symptoms is something called Lipodrops there’s very little fat shown in the bright white and then if we look at Tom’s picture and this is striking that around the edge there really is no fat but within the tummy we can see great accumulations of fat so this is absolutely fat in the wrong place I’m to diabetic um and the problem is that when I’m cycling very hard my ability to basically transfer the food I eat and the sugars that I eat to the working muscle is quite difficult because my insulin resistance Rises MTP syndrome is basically saying don’t be a cyclist as a cyclist I used to shave my legs um obviously with no fat under my skin uh shaving legs is not good it’s causing too many Cuts so I now use a a hair removal cream walking is really difficult for me it also means that I have no fat on the shoulds of my feet so it’s almost like walking on the rocks of a a Stony Beach all the time cycling is a bit different because most of my my weight is carried on the saddle so any pain that I feel on the bike if you like is pain that I’ve chosen so conceptually and mentally it’s a lot easier to manage and it’s a lot more empowering because basically I am the master of my own fate if you like because mdp syndrome is caused by spontaneous genetic mutation um and genomic sequencing technology is not been around for all that long for the whole of the first 23 years of my life we had no idea what was wrong with me Tom like all of us has three billion bits of genetic information but just one of those was wrong in order to give him all these problems it was a visiting doctor from India who told us that she’d got a patient and there was this remarkable thing that we had this young man about the same age as Tom who had exactly the same phys iCal appearance who had lipid distrophy now suddenly we could understand why Tom had got diabetes why Tom had got the other things as well and we had a test that allowed us to pick out this syndrome with all the other features my childhood was exactly like other people’s childhoods really my mom and dad were really into making me experience as many things as I wanted to we always approached my various conditions with that kind of a can do attitude there are lots of practical things that you can do that have an immediate and genuine positive effect on your quality of life so in real terms um mdp syndrome obviously affects my daily life in lots of different ways the first thing I do is put on my shoes or slippers so I can get out of bed most people would just do this Barefoot but obviously I can’t so the next thing I do is make an espresso um I’m a huge fan of coffee I’ve done a lot of research into caffeine um and how it aids with the perception of pain um and has a kind of analgesic effect for breakfast most mornings I have a meal replacement drink using this gives me the convenience and more importantly lets me avoid unnecessary pain on my feet there was a terrific kind of media freny of about the mdp diagnosis this misconception that you had this young man who can’t get fat and despite the the media frenzy the medical team have decided not to rename mdp syndrome Stanford syndrome um and I’m [Laughter] crushed so it was wonderful that we had all of this kind of global press attention um and what I wanted to do was hopefully find other people with the condition that was successful and there are now I think there are 12 confirmed cases worldwide the diagnosis is really important to some people and I can completely understand that because when when you’re the the parent of a child with with a a condition that you don’t know what it is and at least by having a diagnosis you have something tangible upon which to kind of place part of your emotional burden for me it makes absolutely no difference whether it has a diagnosis or not because it’s not going to lead to any treatments or therapies at least for the next few decades mdp syndrome is simply one aspect of my personality it’s not my entire personality I don’t ride a bike to be an inspirational figure I ride a bike because I like riding a bike if you know one of the side effects is that that perhaps inspires other people with the condition or with similar conditions to get out on their bik and obviously that’s a wonderful thing