A Year's Worth Of Visitors In Just One Day...

02/09/2009

August Bank Holiday Medieval Bash For Rare Lung Disease Attracts A Year's Worth Of Visitors To Welsh Historic House In Just One Day

(2nd Sept 2009) Organisers of a medieval extravaganza at one of Wales most historic houses to highlight the rare lung disease Pulmonary Hypertension (PH) and raise cash for the National patient charity that supports people with the condition, are ‘stunned and overjoyed' by the substantial numbers of people who sampled the sights and sounds of Medieval Wales on August Bank Holiday Monday.

Local MP Lembit Opik and Welsh Assembly representative Mick Bates took time out of their busy schedules to show their support for the initiative. Commenting on the restored Ty Mawr (Great House), the largest medieval aisled hall in Wales, the Liberal Democrat MP for Montgomeryshire said, " It's an absolute triumph of living preservation, you get the sense, the aura almost, of half a millennium of existence'. Mr Bates added, "I totally agree with Lembit. What amazes me was how skilful the medieval builders and craftsman were to create these amazing timber structures".

60 yr old Anna Cunningham Ingram, who lives in Ty Mawr, was diagnosed with Pulmonary Hypertension last year and cooked up the idea of staging a fund raising event at her home in Castle Caereinion, Powys, whilst convalescing from a recent car accident.

"The charity, PHA-UK have been so supportive to me that I wanted to give something back. Because the house is so historically special (a rare surviving example of an important late medieval house typical of the Welsh Marches), it's open to the public one weekend a month from May to October so I thought I would try and organise something extra special. I never in my wildest dreams thought that we'd be welcoming hundreds of people on the day."

Commenting on Anna's efforts aided by History Matters, who promote an appreciation of medieval history largely through re-enactments of events, traditions and skills central to that age, Lempit Opik added, "I've got nothing but admiration for the those involved in raising the profile of Pulmonary Hypertension and this is the first time in my twelve years as an MP I've seen something as creative as this celebrating such a remarkable building and its extra-ordinary history of over 600 years and at the same time raising awareness of a disease that many people won't have heard of."

Thanks to the Powys Castle Estate and grant aid from CADW: Welsh Historic Monuments, Ty Mawr now looks as it would have done in 1635. It is a ‘Scheduled Ancient Monument' and in 2000 was voted Building of the Year by the RICS- Royal Institute of Chartered Surveyors. The house S4C will be filming there for a series due for transmission in the winter on the hidden houses of Wales.

Alongside tours of the ‘Great House' visitors to the Bank Holiday event enjoyed talks and displays of arms and armoury from the 15th century, demonstrations of the long bow and archery, falconry, spinning, shoemaking, leather stitching, wood carving, candle making and medieval cookery.

The local Castle Caereinion village community merged their summer fete with the event and visitors were ferried to and from both events via a free shuttle bus service, sponsored by Radio Maldwyn's ‘Word On Health' reporter Paul Pennington, who also organises publicity and campaigns for the Pulmonary Hypertension Association UK (PHA-UK), who will benefit from the days proceedings. He commented,

"All credit to Anna Cunningham Ingram for making the day happen, as it did. Although she lives with PH, she manages the condition and she doesn't let it control her. She's such an inspirational character. It has been such an honour to be at Ty Mawr and see so many people enjoy the spectacular setting, learn more about medieval Wales from History Matters, and to have the opportunity to enlighten people about PH. On behalf of PHA-UK, I'd like to say a very special thank you to Tom Till and everyone at the Powys Castle Estate and CADW, the Welshpool Tourist Information Centre for their support and to Mr Bates and Mr Opik, for finding the time to join us and their kind words. The local media have also played a very important role in publicising what we hope will become an annual event. "



NOTES TO EDITORS:
The Pulmonary Hypertension Association (UK) (charity number 1082613) provides support, understanding and information for everyone whose life is touched by Pulmonary Hypertension. In the autumn of 2009, the charity celebrates a decade of achievement for people with PH including being the only patient support group to stop the Governments Drugs Watchdog NICE removing life saving therapies from Doctor's armoury of treatments for this fastest growing area of medicine. To find out more about PHA-UK: visit www.phassociation.uk.com

Anna Cunningham – Ingram: Biography

It's impossible not to be in awe of 60 year old Anna Cunningham-Ingram; yes, she lives in one of Wales' most historic houses, but it's more to do with to do with her remarkable spirit in the face of extreme adversity than her home.

Anna has twice been told she has a life threatening illness. The first time was in 1997 when she was diagnosed with Pulmonary Fibrosis and was given 12 months to live. Then in December 2008 she was told she had Pulmonary Hypertension(PH), a rare, incurable lung condition. No sooner had she got over that shock, when she was involved in an horrific car crash on her way to Scotland severely damaging her left side including broken ribs, a collapsed lung- not ideal when suffering from two lung conditions. After various skin grafts and a three week stay in hospital, Anna was back home in Castle Caereinion, Powys enjoying life as best she could from a wheel chair.

Anna, a former teacher, was diagnosed with PH unusually quickly due to her other condition. She had been unable to shake off a chest infection and during a routine check-up at London's Royal Brompton Hospital, PH was picked up.

I consider myself fortunate to have PH because I should never have lived long enough to get it! But being told I had a life-threatening illness for the second time I thought ‘oh no not again'. However the fact that I had lived 10 more years than expected did bode well for my PH prognosis."

Anna took part in a trial for on of the PH treatments that are making a difference in many patients' lives and once over the initial side effects she felt a lot better and back to her normal self.

Now she enjoys life bird watching and living in the largest medieval aisled hall in Wales, a rare surviving example of an important late medieval house, typical of the Welsh Marches. This means that Anna's home is open to the public once a month for six months of the year with medieval re - enactments taking place in the grounds.

"I was looking to move in 2008 and as soon as I saw this house I knew it was for me. It's given me something to hang on to when everything else has been grim," said Anna who lived in Jersey and Cyprus before moving to Wales.

Anna says she is indebted to the Pulmonary Hypertension Association UK for all the support they gave her when and since her diagnosis. "The charity has been wonderful- I can't thank them enough."



PULMONARY HYPERTENSION (PH) BACKGROUNDER

· PH is a disease where the blood pressure in the arteries in the lungs elevates putting pressure on the heart and reducing the amount of oxygen that is able to reach the tissues of the body causing breathlessness and exhaustion. This can significantly impact the sufferer's ability to lead a normal life. PH can often lead to heart failure and can be a standalone condition or associated with other diseases.

· PH is often mistakenly diagnosed due to its similarities to asthma. PHA-UK research shows the average time for PH to be correctly diagnosed across the UK is two years with 1 in 5 patients having to wait significantly longer.

· With correct treatment and a faster diagnosis almost two thirds of PH patients will survive longer than 5 years, however if not treated, approximately half of PH patients die within two years.

· PH affects people of all ages including young children. It is twice as common in women as men and the commonest age at presentation is 40 - 50 years old.

· There are currently approximately 4,000 diagnosed PH sufferers across the UK and it's estimated that there are a further 4,000 who are undiagnosed.

· People with PH experience a range of symptoms, the most common of which are breathlessness, dizziness, fainting, chest pain, palpitations and increased lethargy. These symptoms are described as "non-specific" which means it is quite difficult to diagnose.

· There are 8 PH specialist centres in the UK, (4 in London, Great Ormond Street, Hammersmith, Royal Brompton, Royal Free with the remainder situated in Glasgow, Sheffield, Newcastle and Cambridgeshire) which provide expert diagnosis, treatment and management for PH patients.

· Although there is no cure, there are effective and relatively new treatments that can help sufferers if they are diagnosed early in the disease progression.