I don't process fat in the normal way.
I have a condition that's so rare I'm 1 in 584 million.
People have a tendency to think that having no body fat as a cyclist must be great
and it would be a tremendous advantage
but the reality is that it's a big disadvantage.
I'm Tom Staniford, a passionate cyclist and I have MDP syndrome.
I rode for Great Britain as a para-cyclist.
I was actually the national champion in 2011.
MDP basically stands for mandibular dysplasia with deafness and progeroid 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 mandibular dysplasia basically means small jaw.
Lots of overcrowding in the mouth with teeth, as you can see.
My ears are functionally fine.
The problem is I've got faulty signalling between the brain and my ears.
I didn't actually get hearing aids until I was about 14.
People are reticent to wear hearing aids because of the kind of negative
impression of "oh, only old people have hearing aids"
and that's just simply not true.
The progeroid 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 gaunt and wrinkled.
Another one of the symptoms is something called lipodystrophy.
What we can see in the person who doesn't have lipodystrophy is round the edge of the body
there's a layer of fat and if you look within the tummy itself, there's very little fat shown in the bright white.
And then if we look at Tom's picture and this is striking that round the edge,
there really is no fat but within the tummy you can see great accumulations of fat.
So this is absolutely fat in the wrong place.
I'm type 2 diabetic, 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.
MDP syndrome is basically saying don't be a cyclist.
As a cyclist, I used to shave my legs, obviously with no fat under my skin
shaving legs was not good, it was causing too many cuts.
So I now use a hair removal cream.
Walking is really difficult for me.
It also means that I have no fat on the soles of my feet.
So it's almost like walking on the rocks of a stoney beach all the time.
Cycling is a bit different because most of 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, that'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 a spontaneous genetic mutation.
And genomic sequencing technology has 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 physical appearance, who had lipodystrophy.
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 mum and dad were really into making me experience as many things as I wanted to.
We always approached my various conditions with 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, 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.
I'm a huge fan of coffee. I've done a lot of research into caffeine,
and how it aids with the perception of pain 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,
it lets me avoid unnecessary pain on my feet.
There was a terrific kind of media frenzy about the MDP diagnosis.
This misconception that you had this young man who can't get fat.
And despite the media frenzy,
the medical team have decided not to rename MDP syndrome, Staniford Syndrome.
And I'm crushed.
So it was wonderful that we had all of this kind of global press attention.
And what I wanted to do will 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 you're the parent of a child with a condition that you don't know what it is,
you at least by having a diagnosis, you have something tangeable
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 new 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 bike
then obviously, that's a wonderful thing.