Tudur Phillips: Yn y Gwaed

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-I feel it's important for me

-to keep fit.

-It's what I enjoy doing.

-Since I've been

-a children's TV presenter...

-..I've enjoyed every minute of it...

-..especially when I've pushed

-my body to the limits.

-I enjoy what I do.

-It changed everything

-when I found out I had it.

-A year ago, I was

-like every other man of my age.

-I did everything,

-sport, whatever I wanted.

-I enjoyed every minute of my life.

-Now, I've had to stop

-and think about my life...

-..and think about the future.

-Ankylosing Spondylitis

-is a form of arthritis.

-It mostly affects the spine.

-Three times as many men as women

-suffer from this disease.

-It starts when boys are at school.

-At its worst,

-it can make a person hunched...

-..and affects their ability

-to walk and drive.

-At its worst,

-it's a serious disease.

-In my early 20s,

-I lived life to the full.

-Then, whoa!

-I discovered

-that I had a serious back condition.

-I was in pain,

-I felt my world turning upside down.

-I didn't feel

-as if I could be myself ever again.

-It's really hard.

-At the moment, there are

-no known cures for the disease.

-I'm confident we'll see

-better treatments in the future...

-..but right now,

-there is no cure for it.

-I always look

-at the positives in life.

-I won't let this change anything.

-I'll fight against it,

-I'll get the best out of it...

-..instead of being negative.

-I've always been

-a determined person.

-I won't let this change that.

-I've enjoyed being on the stage

-from an early age.

-Mam and Dad were involved...

-..with Dawnswyr Talog

-and Aelwyd Hafodwenog.

-I was raised to dance!

-I won competitions in the Urdd

-and National Eisteddfod many times.

-I competed as a folk dancer in

-the Bryn Terfel Scholarship in 2008.

-It came as no surprise to me to see

-Tudur following the career path...

-..that took him to being a presenter

-in front of the camera.

-I'm quite astonished to see him

-being paid for activities...

-..I wish I had the chance to do!

-Jumping out of an aeroplane,

-bungee jumps, all those activities.

-It started before I was aware

-that anything was wrong with me.

-I started feeling pain in my feet.

-I couldn't put my foot down flat.

-I thought I'd pulled a muscle

-or twisted my ankle.

-I expected a quick recovery.

-Then I felt pains in my back,

-the left-hand side of my lower back.

-I decided to seek some help.

-A lot of people have back pain

-and it's not this disease.

-The consultant I visited

-was Ceril Rhys-Dillon.

-I felt at ease with her...

-..she spoke Welsh, she came from

-Tregaron and I could talk to her.

-She asked me about what my body

-could and could not do...

-..and enquired about

-my family's medical history.

-Following an MRI scan...

-..I was told I had AS,

-Ankylosing Spondylitis.

-The diagnosis confirms

-if a person has the disease.

-The pain must be present

-for at least three months...

-..to confirm the diagnosis.

-We're looking for arthritis

-in the sacroiliac joint...

-..at the base of the spine.

-We look for evidence

-on both sides...

-..but we can make a diagnosis

-if it's only on one side.

-In the first five to ten years,

-the X-ray would be normal.

-It's hard to determine which ones

-have been affected by the disease.

-If we do an MRI scan,

-we see the changes much sooner.

-This bone can be seen on this X-ray.

-You can see a large white spot here.

-That shows the inflammation

-of that joint clearly.

-That raises the possibility

-of developing AS.

-I hope I can go back

-to running and playing...

-I love playing rugby and football.

-That's something I really hope that

-I can continue - playing sports.

-I hope so - fingers crossed.

-I hope so - fingers crossed.

-

-Fingers crossed.

-In the long term, 40% of the people

-diagnosed with AS...

-..can develop a severe disability.

-The spine locks.

-In such cases,

-they can't move the head.

-There's difficulty

-in lifting the head.

-The head and eyes face the ground

-as a result.

-The inflammation causes the bones

-to fuse together or lock.

-Then, the spine

-is far less flexible.

-One of the best pieces of advice

-I've had from doctors is to swim.

-When you swim, you keep your head up

-and your back straight.

-It prevents me from crouching.

-There's no pressure on the body

-and it aids movement.

-The more I swim,

-the greater the benefits.

-Swimming is very beneficial.

-I try to do as much as I can.

-AS can affect the whole spine.

-Often,

-it only affects the lower back...

-..but it can spread

-to the thorax and the neck...

-..and to other joints - the

-shoulders, elbows, knees and hips.

-It can also affect

-the eyes, intestines and heart...

-..and even the lungs.

-When I discovered

-I had Ankylosing Spondylitis...

-..I felt slightly relieved.

-At least I knew something was wrong.

-It was harder to think that I was

-in pain but that nothing was wrong.

-Six months of my life had passed

-and I couldn't be myself.

-Finding out was a relief,

-but at the same time...

-..I had to come to terms

-with a serious condition.

-I had very mixed feelings.

-No-one in their early 20s

-expects to hear...

-..that they have

-a lifelong condition.

-But with the support of his family,

-friends, the physios and doctors...

-..I hope he can cope

-with the disease.

-I hope it doesn't affect his life

-too much.

-Most of the people we see have never

-heard of the disease before...

-..unless another member

-of the family has it.

-If a close relative,

-a parent or sibling has it...

-..the risk increases three-fold.

-It came as quite a shock to discover

-that Tudur had this disease...

-..especially since his sister

-had it too.

-With Cerian, we didn't know

-what was wrong for around two years.

-She visited different

-physiotherapists and doctors.

-After the scan, Cerian received

-confirmation that she had it.

-I think in the back of Tudur's mind,

-and ours...

-..since it is

-a hereditary condition...

-..it could affect him too.

-But it was disappointing

-when it was confirmed.

-When I started researching it

-on the Internet...

-..I just burst into tears.

-I just thought,

-"Why me? What is it?"

-It stopped me playing netball

-and sports I enjoyed.

-I'm a PE teacher.

-I looked at the negatives

-before the positives.

-I thought to myself,

-"I can't do this, I can't do that."

-I was just devastated.

-Try it and bend your knees slightly.

-That's what they made me do.

-When we discovered

-Tudur and Cerian had it...

-..we were aware that many people

-in my family had serious arthritis.

-My father had a hunched back.

-I remember asking my doctor

-if my father had AS.

-The tests didn't exist at the time.

-The doctor said it was possible

-as well as other conditions.

-My husband had become hunched.

-His father died when he was 19...

-..and that's when

-it started affecting him.

-His mother had an aunt...

-..this is going back many years,

-I didn't even know her...

-..she became crippled.

-She used a stick

-if she wanted to scratch her nose.

-She couldn't lift her hand

-to her face.

-Cerian and I

-have Ankylosing Spondylitis...

-..but we also have a younger sister,

-Lleucu.

-She's in university now.

-We don't know

-if she's carrying the gene.

-She hasn't shown any symptoms yet.

-I don't know if she wants

-to find out by having a blood test.

-There is a blood test, a kind

-of gene test, called the HLA-B27.

-There is a strong link

-with this gene...

-..but we don't use the test

-to make the diagnosis.

-It doesn't confirm

-one way or the other.

-It does show if there's a risk

-of developing the disease.

-Sometimes,

-it's better not knowing...

-..but I remember my sister

-having it for years.

-She'd play netball and when

-she came home, she couldn't move.

-She was in constant pain.

-If it was confirmed as AS,

-I don't think it would change a lot.

-No-one wants to know

-they have a chronic disease...

-..but I wouldn't want it

-to be a mystery.

-It'd be better to sort it out.

-In terms of genetics...

-..I think I'm the one

-who passed it on but we're not sure.

-We all pass on characteristics...

-..and I feel guilty

-every now and then.

-But the children have told me,

-"Don't worry, Mam, we're positive."

-It's an invisible disease

-and that's an important factor...

-..when someone, young or old,

-comes to terms with the diagnosis.

-People tell them

-they look so healthy.

-There can't be anything wrong.

-People who have arthritis...

-..often don't get

-empathy or sympathy...

-..from the people around them.

-Stwnsh Y Gemau is on tomorrow

-just after 5.30pm.

-At its worst,

-when it's very painful...

-..I could go back to bed

-because I have no energy left...

-..especially when I have to be

-bounding with energy in the studio.

-I think to myself, "Come on,

-do something to wake yourself up."

-When the working day is over,

-I just want to sleep.

-It drains me of so much energy.

-It's difficult.

-Dancing, especially clog dancing,

-when hitting the ground hard...

-..it triggers the pain

-in my back immediately.

-I haven't been able

-to do it for a while.

-I miss it terribly.

-The pain varies from day to day.

-Some days I wake up

-and I feel as if I have a new back.

-I bounce into the bathroom!

-Other days, I've had to ask

-my sister or my boyfriend...

-..to carry me to the bathroom

-or downstairs.

-It varies from being free of pain...

-..to not being able to walk

-or do anything.

-What am I doing here then?

-In your pants!

-When they're in pain,

-it's excruciating. They can't move.

-A moment later... I remember taking

-Cerian to last year's Eisteddfod.

-We reached the car park and we had

-to walk about a quarter of a mile.

-She couldn't walk.

-Eirlys and I had to carry her.

-Not long afterwards,

-the following night...

-..she was clog dancing

-as if nothing was wrong with her.

-So it's a weird disease,

-very strange.

-I do believe that if I don't look

-after my body, I'll lose my agility.

-What keeps me happy and positive...

-..is believing it's not going

-to happen, I won't let it happen.

-I'll do anything I can

-to stop it happening.

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-I found out I had AS

-just over a year ago.

-I hope I found out early enough

-to be able to battle against it...

-..and make sure

-it doesn't get the better of me.

-I'm determined to overcome it.

-Around 200,000 people in Britain

-have this disease.

-Up to 5,000 live in Wales.

-At the moment,

-there are no cures for the disease.

-However, there are treatments

-to control the pain symptoms.

-Come up slowly,

-again lifting your head last.

-There's physiotherapy...

-..there are exercises to keep fit...

-..painkillers

-and anti-inflammatory tablets.

-Further treatments include...

-..injecting steroids

-into the painful joints.

-Normally, these injections

-are only effective for 6-8 weeks.

-So far, I've had two injections...

-..with a needle this long

-being inserted into the joint.

-Then a sharp prick.

-It's very painful.

-Once the steroid is injected, the

-benefits are felt after a few days.

-Two or three days later,

-I feel like a new man.

-I don't feel any pain.

-It's the best feeling ever.

-I feel like a child

-playing with a new toy.

-Tudur is young and enthusiastic.

-He wants to do everything he can

-to help himself.

-That will help him

-along the journey.

-He wants as much information

-as he can get.

-Recently,

-new treatments have been developed.

-They're called Anti-TNF treatments.

-There are side effects

-to these treatments...

-..that can affect the immune system.

-Additionally,

-they're very expensive.

-The cost to a patient is 10,000

-a year for the rest of their lives.

-I started the treatment around three

-years ago, for three to four months.

-I felt as if I had a new back.

-I didn't feel ill at all.

-I could jump out of bed,

-I could clog dance...

-..but if you take

-a lot of Anti-TNF...

-..it does tend to dampen

-the immune system.

-I became ill

-every time I started to take it.

-By the end, I chose a healthy life

-over being ill constantly.

-Tudur is strong.

-He looks after himself very well.

-I think Cerian suffers more...

-..because she's not

-so strong, physically.

-She suffers a lot more.

-I'll tell you now,

-if Lleucu ends up with it...

-..well...

-Lleucu's like me -

-she can't stand any pain.

-Any pain at all, so...

-I hope it doesn't affect Lleucu.

-It's a shock

-but it's not the end of the world.

-I now know what's wrong,

-I have this positive gene.

-I'm only a carrier.

-It doesn't mean you have it yet.

-What are you going to do next?

-I hope I can see a specialist.

-I'm waiting for that now.

-It's important for her to find out

-if she has AS as soon as possible.

-The earlier she can find out,

-the earlier she can be treated.

-She can exercise

-and take medication.

-In the long term, 40% of the people

-diagnosed with AS...

-..can develop a serious disability.

-It's hoped that these treatments can

-prevent long-term disability...

-..but since

-it's a degenerative disease...

-..it will take years for us

-to show that these treatments...

-..have a positive effect

-on any changes in the bones.

-I've come to meet

-AS sufferers today.

-I'm not sure what to expect.

-I'm looking forward to discovering

-how they cope with it...

-..from day to day, year on year.

-Goodness knows

-what lies ahead for me.

-Tudur, welcome.

-Start your exercises

-on the blue mat and we'll go around.

-Control, pull in that tummy.

-It's hard work!

-It's hard work!

-

-Yes!

-You're nearly there - come on.

-Pull yourself up, nice and tall

-and ease off.

-That's brilliant, lovely.

-Well done. Lovely.

-How many have fused? Which parts?

-Most of the back.

-I can't turn.

-I can't touch the floor

-if I'm standing up.

-But you keep going and enjoy

-yourself. That's what matters.

-On we go!

-I haven't realized

-how much this has changed my life.

-It's turned it upside down.

-Those men could hardly move

-but they carried on and worked hard.

-I thought, if they're in pain and

-they've been like that for years...

-..while I'm still able

-to jump around the place...

-..I can push myself further.

-You're faster than me!

-I'm used to it.

-I've done it more than twice.

-I have a lot of catching up to do.

-If this programme

-can do one thing...

-..I hope it gives confidence...

-..to other people, especially young

-people, or indeed of any age...

-..to cope with the disease.

-As someone who's just been

-diagnosed with this disease...

-..do you have any tips for me?

-Never give up. Never give up.

-If the physio says jump - jump!

-You ask how high on the way up.

-You'll be OK then.

-Thank you.

-It's definitely brought us closer.

-We're supporting each other and

-learning more about the disease...

-..finding out

-what we can do to help and support.

-Doing these exercises

-is of paramount importance...

-..but we have to move on too.

-Life has so much to offer us.

-There's no need to dwell on it

-all the time.

-In the future, I have to do

-all I can to get better...

-..all I can

-to make sure I'm alright.

-If I'm alright, I can help others.

-If Cerian, or anyone, is ill...

-..I can encourage her to get off

-her backside and do some work.

-We need to keep moving.

-I'm lucky.

-I have a family

-that is willing to help me.

-If they see me in pain

-or faltering...

-..they're always there.

-I can phone Cerian.

-It makes it far easier to speak

-to someone who's suffering the same.

-If anyone asks me how I am, even if

-I'm in pain, I say that I'm fine.

-If I am in pain, I am fine.

-I have it,

-it will be with me forever.

-I've just got to live with it.

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-If you would like more information

-about ankylosing spondylitis...

-..details

-of advice and support helplines...

-..are available on S4C's website.

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