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Programme Archive Tasglann Phrògraman

Trusadh: The Private Disease

BBC ALBA – Monday 25 November 9.00pm

Trusadh: An Galar Dìomhair

BBC ALBA - Diluain 25 Samhain aig 9.00f

Kerry Finlay

Crohn’s Disease is on the rise in Scotland, particularly among children and no-one knows why. The disease is part of the family of inflammatory bowel diseases (IBD) and although it is rarely life threatening, it is lifelong, debilitating and as yet incurable.

BBC ALBA’s new documentary, ‘Trusadh: An Galar Dìomhair/The Private Disease’ tells the story of the hidden illness that affects 1 in 1000 in the UK and explores the different possible reasons and triggers for Crohn’s Disease.

The number of children in Scotland being diagnosed with Crohn’s and Ulcerative Colitis, both in the family of IBD, has risen by 75% in just over a decade according to a study of all Children’s Hospitals in Scotland carried out by Edinburgh University in 2012 (*).The reasons for this are unclear, but Crohn’s is a “Western disease” explains Dr Richard Russell, Paediatric gastroenterologist at the Royal Hospital for Sick Children, Yorkhill, Glasgow, as it is more common in affluent countries. Those living in Scotland are also more likely to develop Crohn’s disease than in any other parts of the UK.

While Crohn’s is genetic, it seems that social or environmental factors can trigger the disease and experts are divided as to what exactly these triggers are explains Dr Richard Russell: “It could be triggered by antibiotics, a tummy bug in kids, smoking in adults, but we don’t really know the reason.”

Although there is currently no cure for Crohn’s a new treatment involving experimental hematopoietic stem cell transplantation offers some hope. The treatment is being developed at the Western General Hospital in Edinburgh and only 10 patients have received the treatment in Scotland so far.

Consultant Haematologist, Dr Peter Johnson of the Western General Hospital in Edinburgh explains how the new treatment works: “Crohn’s disease is an abnormal immune reaction. The way hematopoietic stem cell transplantation works is to seek to reset the abnormal immune system. It’s almost like taking a computer and turning it around and pressing the factory default reset button. You’re trying to reset a normal immune system so that the Crohn’s disease can go into remission.”

Throughout the programme we hear the poignant and moving stories of those living with Crohn’s disease. From Lewis is Karen Morrison who was diagnosed at the age of 10.

Karen explains: “One of the worst things about having Crohn’s is being on steroids. I was on quite a high dose and although I felt great and felt strong it was affecting my face – my face became quite swollen. It was difficult when I was at school as I thought people spoke about it but it was all in my imagination but when you are young self-image is so important and you don’t want to be different.”

Chrisma MacDonald from the Isle of Skye was one of the first in Scotland to trial the new hematopoietic treatment in 2011. Chrisma was warned that it could be fatal but decided it was a risk worth taking after failing to respond to other treatments.

Chrisma said: “My life has changed a lot. When I had the disease I used to worry about what would happen but I’ve more freedom now and I hope it doesn’t return. I also have strength and energy whereas the disease made me tired. In addition to the pain, I used to feel so tired and some things were difficult to do. But now my life has been transformed. It’s a different life.”

Kerrie Finlay (32) from Dingwall was diagnosed with Crohn’s on her 18th birthday. Having tried many therapies for her illness, which is so severe it has left her with fatigue and depression and unable to hold down a job for longer than six months, Kerrie feels she has run out of options, and wants to pursue this new hematopoietic treatment. However, getting funding and meeting the criteria has proved difficult.

Speaking from her hospital bed in Raigmore Hospital in Inverness in March, Kerrie explains that she has reached the end of the road: “So far I’ve been here for all this year, 2013. I hope I won’t be here all year. I can’t get surgery because I’d still be in the same condition. I’ve got one chance left now.”

Music is the best form of therapy for Kerrie other than laughter and the Dingwall Gaelic Choir is her second family and a huge part of her life giving her strength and a focus away from her illness.

David MacLeod (14) from Lewis was diagnosed with Crohn’s when he was just eight. David said: “I can be fine one minute and then I can feel absolutely rubbish the next. Day to day I can get on with it but it’s just the constant battle of being in pain. Then all I want to do is sleep.”

Trusadh: An Galar Dìomhair/The Private Disease has been produced for BBC ALBA by MacTV and will be transmitted on Monday 25 November at 9.00pm.

Tha an Galar Crohn’s a’ sìor dol am meud an Alba, gu h- àraidh am measg chloinne, agus chan eil fhios againn carson. Tha Crohns am measg nan galaran ris an canar “Inflammatory Bowel Disease” no IBD, agus chan eil leigheas ann air an son.

Tha Daibhidh MacLeòid à Eilean Leòdhais a-nise 14 bliadhn’ a dh’ aois. Chaidh dèanamh a-mach gu robh Crohn’s air nuair a bha e 8. “ Uaireannan bidh mi ceart gu leòr, ach an ath mhionaid tha mi a’ faireachdainn uabhasach. Nì mi a’ chùis bho là gu là ach se a bhith air mo chràidh leis a’ phian a tha doirbh. ’S an uairsin cha bhi mi ag iarraidh ach cadal.”

Tha an àireamh de chloinn air a bheil Crohn’s agus Ulcerative Colitis, dà ghalar a th’ anns an teaghlach IBD, air a dhol suas 75 % sna deich bliadhna a dh’ fhalbh.

Chan eil cinnt againn dè tha dha aobharachadh, ach tha Crohns na ghalar a tha nas bitheanta ann an dùthchannan an Iar, leis gu bheil e nas cumanta anns na dùthchannan beairteach. Tha daoine ann an Alba cuideachd nas dualtaich Crohns fhaighinn an taca ri pàirtean eile den Rìoghachd Aonaichte.

Ged a tha Crohns na ghalar ginteil, tha e follaiseach gum feum rudeigin bhon taobh a-muigh buaidh a thoirt air a’ bhodhaig airson a thòiseachadh. Chan eil fhios aig na dotairean ge-tà dè a th’ann, agus seallaidh Trusadh: An Galar Dìomhair air na diofar bheachdan a th’ ann. Innsidh sinn cuideachd na sgeulachdan drùidhteach agus pearsanta acasan air a bheil Crohn’s – inbhich is ògiridh. Cluinnear cuideachd mu leigheas ùr a’ cleachdadh ath-chur cealla stem Hematopoietic, a tha a’ toirt dòchas a thaobh cobhar bhon tinneas.

Tha an dotair tinneasan fala, Dtr Peter Johnson a’ mìneachadh mar a tha e ag obair –

“ ‘S e a th’ann an Galar Crohn’s ach gluasad neo-àbhaisteach bho siostam dìon na bodhaig. Gu sìmplidh tha ath-chur cealla stem Hematopoietic ag obair le bhi ag ath-thòiseachadh siostam dìon na cuirp. Tha e mar gu bheil thu a’ bruthadh putan air coimpiutair ’s tu ga thoirt air ais gu mar a bha e bho thùs. Tha thu a’ feuchainn ri ath-thòiseachaadh a dhèanamh air an t-siostam dìon son ìsleachadh a thoirt air Crohn’s.”

‘B i Chrisma Dhòmhnallach bhon Eilean Sgitheanach aon den chiad dhaoine ann an Alba a fhuair an cothrom an leigheas ùr seo fhaighinn ann an 2011 as dèidh dhith na diofar leigheasan eile fheuchainn gun soirbheachas. “Tha mo bheatha air atharrachadh gu mòr. Far an robh ’s dòcha uallach orm dè an ath cheum a bhiodh ann leis an tinneas, tha beagan saors’ agam a-nise agus dòchas nach till e. Ach cuideachd tha neart agam agus lùths agam, rud nach robh. Uaireannan eile bhithinn cho tinn leis an tinneas. A bharrachd air pian is eile ’s e sgìths agus gun robh mi a’ faireachdainn uaireannan gun robh rudan cho doirbh dhomh. A-nis tha mo bheatha air atharrachadh gu tur agus ‘s e diofar beatha a th’ann.”

Fhuair Kerrie NicFhionnlaigh à Inbhir Pheofharain a-mach gun robh Crohn’s oirre air latha a co-là-breith is i 18. Tha i a-nise 32. As dèidh iomadh leigheas fheuchainn tha i a’ faireachdainn nach eil roghainn aice air fhàgail ach an leigheas ùr seo fheuchainn. Ach tha e na dhuilgheadas maoineachadh fhaighinn agus feumalachdan sònraichte a choileanadh. A’ bruidhinn bho a leabaidh ann an Ospadal an Rathaig Mhòir ann an Inbhir Nis sa Mhàrt, bha Kerrie gu mòr a’ faireachdainn gun robh i air deireadh a slighe a ruighinn – “ 2013 – tha mi air a bhith anns an ospadal fad na bliadhna. Tha min dòchas nach bi mi ann fad bliadhna. Chan urrainn dhomh obair lannsa fhaighinn air sgàth gum bi mi fhathast anns an aon suidheachadh. Tha aon chothrom agamsa an-dràsta.”

Trusadh – An Galar Dìomhair – sgeulachd an tinneis fhalaichte a tha a’ toirt buaidh air 1 à 1000 ann am Breatainn - a tha a’ dol a-mach air BBC ALBA aig 10f air Diluain an 25mh den t-Samhain.


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