European heart valve disease awareness week highlights the life and death difference a diagnosis makes

Don’t mistake heart valve disease symptoms for old age urge heart medics

4-year-old Katie Jane English is playing doctor with her grandfather, Jim Logan, and asking him to look out for the signs of Heart Valve Disease.

Top heart doctors are urging patients to know and look out for the symptoms of Heart Valve Disease and ask their GP for help in a Croí, the heart & stroke charity, campaign launched today, marking European Heart Valve Disease Awareness Week.

Symptoms such as breathlessness, dizziness, swelling of hands or feet and fatigue are sometimes mistaken to be old age when in fact they are symptoms of Heart Valve Disease (HVD).

A diseased valve can either be repaired or replaced by surgical or less invasive procedures and the patient goes on to have a more positive health outlook as a result.

However, 50% of those with the most severe form of Heart Valve Disease – aortic stenosis – will die within 2 years if not diagnosed and promptly and appropriately treated.

Irish research shows that only 4% of the target age-group (55+) knew of Heart Valve Disease.  Those interviewed were ten times more likely to be concerned about heart attack and stroke than they would be about Heart Valve Disease (11.9% and 10.4% respectively compared to 1.4%).

While HVD can impact younger people in their 40s and 50s, aging is a primary factor, and generally the incidence of HVD increases from age 70 onwards.

Symptoms are often confused or misinterpreted as normal signs of aging.  These include:

  • Fatigue
  • Shortness of breath
  • Chest pain or tightness
  • Swelling of ankles and feet
  • Dizziness
  • Fainting
  • Rapid or irregular heart beat
  • Heart murmur

Croí is encouraging those in the 65+ age group to be aware of these signs and symptoms and if experiencing them, to visit their GP and ask ‘could it be Heart Valve Disease?’.

“GPs can easily identify a potential issue through a stethoscope examination and research shows that approximately one third of GPs do this as a matter of course.  However, some don’t, so if you’re over 65 and concerned by symptoms, be proactive, go to your GP and ask for a stethoscope check at least once a year” said Dr Darren Mylotte, Consultant Cardiologist, Galway University Hospital and Senior Lecturer, NUIG.

The treatments for HVD are in many cases less of an ordeal than the heart surgery of former years.  In some cases, valves can be repaired and replaced either minimally invasively through a 4-5cm incision or via a catheter through an artery in the leg.  Recovery is much less painful and swifter as a result.

“The landscape of heart valve surgery has changed significantly, even in the last few years. Technology is continually allowing us to reduce the risk and pain to our patients, which in turn reduces fears related to treating a condition such as HVD.  GPs who communicate this to their patients tend to help significantly with the patient’s apprehension around seeking treatment” said Dr Samer Arnous, Coronary and Structural Interventional Cardiologist.

“Self-awareness is so important. The patient plays a significant role in his/her own treatment pathway. People should not dismiss or ignore symptoms and warning signs and simply attribute them to ‘old age’. It is vital that you discuss any concerns that you may have with your GP. Sometimes we see patients that are just too sick to treat but had they been diagnosed when they first became symptomatic, the prognosis may just have been more positive,” said Mr. Alan Soo, Lead Consultant Cardiothoracic Surgery at Galway University Hospital.

Through the European Heart Valve Awareness Week (September 16-22), Croí – the heart and stroke charity – is highlighting the prevalence of HVD amongst the 65+ age group in a bid to help patients reach and enjoy their third age with good health.  For further information please visit www.heartvalveweek.eu

“It’s crucial that both GPs and patients understand the symptoms.  Knowledge is empowering for the patient, allowing them to make informed and timely decisions which could clearly improve their health outlook for a number of years,” said Neil Johnson, CEO, Croí.

Galway Night Run: Race The Prom In Aid Of Croí

Galway Night Run: Everyone welcome to race the Prom, in aid of Croí

Terry Small from Castlegar, Galway, is busy training for his second Croí Night Run, having completed his first 5km Night Run last year. “I really enjoyed it! I jogged half the distance and then walked the rest. I hadn’t won a medal in years… I love showing it off,” says Small.

Terry was referred to Croí, the Heart & Stroke Charity, in 2017 after having a stent inserted following a heart attack. He started with Croí’s Active Heart Cardiac Rehab programme and now continues to attend Croí’s exercise programmes every Tuesday. “I wasn’t doing much exercise before, but now I am as fit as I can be,” says Small.

The Annual Galway Night Run in aid of Croí is one of the charity’s biggest fundraising events and it caters for all ages and abilities (competitive runners, family walkers, beginner joggers, etc.). Join Terry and his two daughters for the Night Run on Friday, October 11 at 8pm on the Salthill Prom. This year promises to be even bigger and better to celebrate the 5th anniversary, with music and entertainment at the start and finish line. The run will be chipped timed and everyone will receive a medal!

Thanks to the support of our sponsor Evergreen Healthfoods and media partner iRadio, 100% of the proceeds go directly to supporting Croí services and supports in the community. This includes heart and stroke prevention and recovery programmes, education and training programmes, and supporting the Courtyard Apartments at Croí House which offer free accommodation and support for the relatives of those receiving heart or stroke care at Galway University Hospitals.

Regular entry is €35, with discounted entry for students, youth and over 65s. Under 12s are welcome for free, but strictly must be under the supervision of an adult. Registration is open at www.croi.ie/nightrun. Join us and help Croí continue to lead the fight against heart disease and stroke in the West of Ireland.

The Story Of My Heart

By Pearl O’Kennedy

Pearl is 80 years old and lives with her husband on Rahoon Road in Galway. They have six children and 12 grandchildren.

“10 years ago, following a visit to my GP, I was diagnosed with a murmur in my heart. As it wasn’t causing any problems, I was kept under supervision. For the next few years, my heart was checked every six months, then every three months – during which time I had started to feel a little breathless.

One day, last October, I was going to have an angiogram. When the procedure was over, the doctor sat me down and told me that I needed to have a valve replaced in my heart – the aortic valve. I was sent for a scan the following week to determine if I would have to undergo open-heart surgery. When I met with my doctor to get more tests done, he explained that he had been working on a new type of valve. After showing me diagrams of the valves and explaining how they work – as well as the potential complications – he asked if I would be prepared to let him use one on me. He told me that this would be the first time this particular valve would be used in Europe. After some hesitation, I agreed to let him use the new valve.

A month later, I had the valve replaced. It was a transcatheter aortic valve replacement (TAVI) and I was conscious throughout it all. The procedure lasted for a little over two hours, during which time a nurse stayed beside my head. When it was over, I was transferred to a warm bed and given some medication to help me sleep. When I woke up, I was back in the Cardiac Ward. I felt good and was discharged three days later.

I got home before Christmas and had a lovely time. However, I did notice my hearing had started to deteriorate. Following a visit to the doctor, I was told that I had lost 50% of my hearing. After having hearing aids ordered for me, I learned that hearing loss is something that can happen a person if they’ve had work done on their heart.

Earlier this year, I received a letter from Galway University Hospital asking me to attend an eight-week cardiac rehabilitation programme in Merlin Hospital. This entailed going to the Cardiac Unit two days a week where we did light workouts such as cycling, rowing, walking, and weight lifting. We were also given talks on diet and other general health topics. There were six men and two women in attendance and I was surprised to see some very young men there. When the eight weeks were over, I started to go back to my own gym. Now, I go twice a week. I spend half an hour on the machines and forty-five minutes doing water-aerobics. Life is good now and although I’m still coming to terms with having to use hearing aids, they are becoming part of my life.

Thank God, my heart is good.”

Pearl

Pearl O'Kennedy

Croí is taking part in European Heart Valve Disease Awareness Week (September 16 – 22, 2019), which aims to raise awareness and improve diagnosis, treatment and management of heart valve disease in Europe. #HeartValveWeek19 See www.heartvalvecouncil.org/heart-valve-week for more information.

Heart Valve Disease Awareness Week

Heart valve disease is becoming more common as a consequence of our ageing population and increased life expectancy. About 1 in 40 adults in the general population are affected and this rises to over 1 in 10 in those over the age of 75 years. This means that heart valve disease is as common as heart failure, yet this is not widely appreciated.

From September 16th – 22nd 2019, Croí will be taking part in European Heart Valve Disease Awareness Week. This week aims to raise awareness and improve the diagnosis, treatment and management of heart valve disease in Europe.

#HeartValveWeek19

Heart Valve Week events:

Our ‘Street doc’ will be out in the West of Ireland for #HeartValveWeek19 with an information booth on heart valve disease! Come say hello and learn more about heart valve disease at the following locations:

    • Monday, September 16th from 11 – 3pm: Eyre Square Centre, Galway
    • Tuesday, September 17th from 11 – 3pm: Supervalu, Castlebar
    • Wednesday, September 18th from 11 – 3pm: Molloys Pharmacy Harrisson Centre, Roscommon
    • Friday, September 20th from 11 – 3pm, Ballinasloe Credit Union, Galway

 

To learn more about heart valve disease, click here.

Global Coalition on Aging Welcomes Attention to Heart Failure at 2019 European Society of Cardiology Congress

Croí are partners in the GCOA Alliance on Heart Failure

Beginning Saturday, August 31st, the European Society of Cardiology (ESC) together with the World Congress of Cardiology (WCC) will highlight the impact of heart failure (HF) on older adults in select sessions during its 2019 Congress. The Congress’ attention on HF will include the launch of a Roadmap for Heart Failure created by the World Heart Federation, which provides a framework for policymakers, innovators, scientists, providers, patients, payers, and others to guide national initiatives to improve health outcomes and cost savings related to HF.

“Heart failure is a widespread and deadly disease, and for older adults, its symptoms are too often downplayed or dismissed altogether as normal effects of aging,” said Michael Hodin, PhD, CEO of the Global Coalition on Aging (GCOA). “While heart failure does increase in prevalence with age, it must not be conflated with the normal process of aging or other comorbidities. Further, because heart failure is the number one driver of hospitalization globally, it is critically important that we eliminate age bias in the healthcare system in order to detect and diagnose heart failure as early as possible.”

HF is one of 14 key themes of the ESC Congress 2019 / World Congress of Cardiology, which include topics ranging from preventative cardiology to e-cardiology and digital health. Of the 84 HF sessions, two include presentations that focus on older patients. GCOA supports the effort to include HF’s impact on older adults in the broader conversation on Global Cardiovascular Heath but recognizes more attention is needed on the role ageism plays in patient detection, diagnosis, treatment and care.

As a result of ageist assumptions, adults 50 and over are routinely under-recognized, under-diagnosed and under-treated. The “ageism factor” assumes HF symptoms, such as fatigue and shortness of breath, are a normal part of aging rather than signs of disease. With the global population over 60 expected to reach 2 billion by mid-century, the number of people at risk for HF is on the rise.

HF affects 26+ million people with approximately 80% of patients over the age of 65. Even while mortality rates for other chronic conditions have continued to improve, the rates for HF have stagnated, and still the majority of patients die within five years of initial hospital admission. HF hospitalization, readmissions and the related costs continue to grow.  As the World Health Organization kicks off its Decade of Healthy Ageing (2020-2030) in May, this year’s ESC is a pivotal time for CVD experts to focus on the link between aging and HF to combat the projected 127% increase in direct and indirect HF costs expected by 2030.

To help illuminate the connection between HF and aging, GCOA is pleased to be partnering with like-minded organizations to create the Global Heart Failure Alliance. The Alliance is already increasing awareness of this connection, aimed at enabling patients, caregivers, and health care providers to take early action, quantify the costs associated with HF, and identify levers to alleviate those costs. The Alliance is focused on:

  • Growing and convening cross-sector, cross-discipline and cross-geography experts who recognize and wish to elevate the connection between HF and aging;
  • Developing and distributing a Heart Failure Consensus Statement with calls to action;
  • Reexamining the Heart Failure Patient Hospitalization Journey to evaluate the full scope of those at risk and associated costs; and
  • Identifying Global Best Practices in Heart Failure.

“GCOA looks forward to continuing the efforts of the Global Heart Failure Alliance alongside leading cardiovascular experts and organizations, including ESC and WHF, to shine a light on the full scope of heart failure’s impact through the lens of aging and therefore the potential to improve patients’ quality of life and reduce health system costs,” said Hodin.

The launch session of WHF’s Roadmap for Heart Failure (Expert Advice – Optimising the organisation of heart failure care) will take place on Monday 2 September, 16:40-17:50 at the Paris Convention Centre.

Heart Valve Disease European Alliance Announces Heart Valve Disease Awareness Week

Following the success of the first ever European Heart Valve Disease Awareness Day in 2018, members of the European Heart Valve Disease Alliance, met in Paris this year and agreed that the event would be better represented over the course of a week in 2019. The Alliance, made up of patient organisations from France, Spain, Italy, The Netherlands, Ireland and the UK, chose the third week of September as the date for the European Heart Valve Disease Awareness Week.

“It has been a pleasure hosting the meeting for the Heart Valve Disease European Alliance here in Paris and we have made great strides with our plans for this year’s awareness event,” said Phillipe Thebault, President of Alliance du Coeur. “Holding it over a week will allow for more opportunities to spread our message about the need for more awareness of heart valve disease across Europe.”

The week will focus on The Power of Positive ageing with key messaging around the four As:

  • Awareness: Call upon governments, scientific societies and industry to collaborate with patient organisations to run national campaigns to raise awareness of heart valve disease
  • Ask: Call upon governments and national payers to fund a check for heart valve disease as part of the annual health check for over 65s
  • Action: Call upon healthcare authorities to put in place national heart valve disease guidelines
  • Access: Call upon national healthcare providers to provide wide and equal access to heart valve disease therapies

“With our ageing population and the high numbers of patients being diagnosed with heart valve disease across Europe, awareness of the disease is essential,” said Eleonora Selvi, Head of Communications for Cuore Italia. “The six countries involved in the European Alliance are all dedicated to making sure that the Four As are realised for the benefit of heart valve disease patients across Europe.”

At the meeting, a number of activities were proposed for each of the participating countries involved. Some suggestions included patient engagement dialogue and roundtables, clinician collaboration and information sharing and a discussion on new methods for developing more awareness around heart valve disease.

To find out more about the European Heart Valve Disease Awareness Week in your area contact your closest European Heart Valve Disease Alliance Patient Organisation:

Croí refurbishes family room at GUH

Article featured in Upstairs Downstairs magazine, August/September 2019 issue

Croí – Heart and Stroke Charity, is based in Galway and our goal is to lead the fight against heart disease and stroke in the West of Ireland. Since it was first established in 1985, Croí has played a significant role in establishing Galway University Hospital as the only referral centre for cardiac surgery in the West of Ireland. In addition, Croí Heart and Stroke Centre is the first of its kind in Ireland, dedicated to the prevention of, and recovery from, cardiovascular disease as well as the promotion of health and well-being. The charity is totally funded with the proceeds of fundraising events, voluntary contributions and philanthropy.

As part of Croí’s patient and family support services, we provide free accommodation in The Courtyard Apartments at Croí Centre whereby families can stay close to a loved one who is undergoing surgery or receiving stroke or cardiac care at Galway University Hospital. At a time of crisis and trauma, Croí helps families stay close to their loved ones.

As an extension of this support to families, we have recently refurbished “The Croí Family Room” to give families a relaxing and quiet place to go while their loved ones receive specialist care in the Coronary Care Unit in Galway University Hospital. With the help of Interior Designer, Rosie O’Connell, and with the funds raised through generous donors and supporters, Croí have transformed this room into a calm space for families to recharge during the most stressful time.

As an independent, non-for-profit organisation, all of Croí’s activities are funded from fundraising initiatives and revenue-generating activities. We are deeply grateful for the support and endorsement of our donors, supporters and volunteers who give so generously of their time and resources. We hope “The Croí Family Room” will be a calm oasis for families with loved ones receiving care.

Interior design by Rosie O’Connell interiors. 

You can follow Rosie’s work on Facebook or Instagram.

Croí to benefit from fashion luncheon

A fashion show luncheon in partnership with charities Croí, National Breast Cancer Research Institute, and Rosabel’s Rooms, will take place on Sunday September 8th at the Glenlo Abbey Hotel.

Brown Thomas Galway will launch its new autumn winter 2019 collections with a special luncheon to raise vital funds for the three charities.

The afternoon will get underway with a champagne reception and music by Michelle Lally before the exclusive fashion show, which features this season’s key trends across sought after labels, including Ganni, RIXO, Victoria, Victoria Beckham, See by Chloé and MaxMara. Lunch in the Corrib Suite will be enjoyed ahead of a charity auction, and the event will finish with evening music by The Rascals in the Dangan Suite.

Brown Thomas Galway general manager Marilyn Gallagher says the charity fashion will benefit worthy charities such as Croi, National Breast Cancer Research Institute and Rosabel’s Rooms.

“Each charity is highly proactive in the west and throughout the country. They provide vital support to people at times in their lives when they are most needed.

“The Brown Thomas Galway charity fashion showcase will present the key trends from across the luxury store’s autumn winter 2019 collections. We greatly look forward to welcoming guests and helping to raise vital funds for these charities.”

The event commences at 2pm and tickets are available through each chosen charity’s EventBrite page at a cost of €90 each or €800 for a table of 10. Croí, National Breast Cancer Research Institute and Rosabel’s Rooms can also be contacted directly regarding ticket sales.

Croí’s mission is to prevent heart disease and stroke; the National Breast Cancer Research Institute funds a comprehensive research programme at the Lambe Institute, NUI Galway to improve the diagnosis, treatments, and outcomes for those who develop the disease; and Rosabel’s Rooms, in partnership with The Irish Hospice Foundation, is facilitating the development of family-friendly bereavement suites in hospital emergency departments around Ireland.

All proceeds donated to Croí will go towards our ‘Women at Heart’ campaign – an awareness campaign which targets women of all ages and highlights the fact that heart disease is not just a man’s disease. Women are six times more likely to die from heart disease and stroke than from breast cancer yet almost 90% of women are not aware of this fact. ‘Women at Heart’ aims to increase awareness of the risks, diagnosis, treatment and prevention of heart disease in women. 

Cairde Concert, in Memory of Seán Henry

The Big Gig, Cairde Seán Henry: A celebration of friendship and life

The inaugural Cairde concert, in memory of Portumna publican Seán Henry, will take place on Sunday, October 6th from 4pm in the Clayton Hotel, Galway. The fundraising concert is a celebration of friendship and life, with Ireland’s top traditional musicians and singers joining together in aid of Croí, the Heart & Stroke Charity, and Cancer Care West. Performers include Frankie Gavin, Joanie Madden and Cherish the Ladies, Seán Keane, Matt Keane, Mary Bergin, Jimmy Crowley, Eileen O’Brien, Anne Conroy, Seán Gavin, John Faulkner, and many more.

Traditional music was a huge part of Seán’s life and this concert is a continuation of Seán’s unrelenting support of the West. The special Cairde charity CD will be available for purchase on the night, originally released by Seán in 2002 with the support of Anne Conroy and Joe Burke. The Cairde CD features 22 tracks from some of Ireland’s finest, including Matt Malloy, Frankie Gavin, Mary Staunton, Tommy Peoples, Seán Maguire to name a few, and all friends of Seán.

“Seán loved life and music, and he wanted to reissue the CD to raise money for the West, but his health during the last few years of his life didn’t allow this. So I decided that I would do this for him, by organising a traditional concert in Galway and reissuing this great CD,” says Jody Henry.

Seán was diagnosed with lung cancer in 1998. He survived the cancer and non- Hodgkin’s lymphoma during the following 18 years, but the treatment damaged his heart, leading to heart failure. Seán passed away five days after open heart surgery in Galway in November 2017. The concert and sales from the CD are in aid of Croí, the Heart and Stroke Charity, and Cancer Care West, raising much needed funds to lead the fight against heart disease and cancer in the West of Ireland.

Advances in treatment have led to improved survival of patients with cancer, but side effects from the treatment can have direct effects on heart function and structure. Heart disease and heart failure as a consequence of previous cancer treatment is a complex issue. Croí’s work in the community aims to raise awareness of the risk factors for cardiovascular disease and screen for early detection. “We are so grateful and honoured to have been chosen as one of the charity partners for this event as it will allow us to raise awareness and continue lifesaving prevention work in the West,” says Christine Flanagan, Croí’s Fundraising Director.

Expressing her appreciation to everyone involved, Orla Cunniffe of Cancer Care West says, “This is a wonderful tribute to Seán and we would like to thank Seán’s wife Jody and the many musicians that will be performing on the night. Funds raised will go towards helping meet the costs of residential and cancer support services at Cancer Care West, which are provided free of charge to cancer patients and their families. People in our community are affected by cancer every day, directly or indirectly through a loved one. Our vision is that no-one should have to go through a cancer experience alone, and everything we do has this vision in mind.”

Event page: croi.ie/cairdeconcert 

Find out more about the two charities by visiting their websites at www.croi.ie and www.cancercarewest.ie.

Sean Henry - Portrait by Helene Cunniffe
The Big Gig Cairde Seán Henry

Galway Night Run: Race the Prom, in aid of Croí

The 5th Annual Galway Night Run in aid of Croí, the Heart & Stroke Charity, will take place on Friday, October 11 at 8pm on the Salthill Prom. This year promises to be even bigger and better to celebrate the 5th anniversary, with music and entertainment at the start and finish line.

This is one of Croí’s biggest annual fundraising events, and thanks to the support of sponsor Evergreen Healthfoods and media partner iRadio, 100% of the proceeds go directly to supporting Croí services and supports in the community. This includes heart and stroke prevention and recovery programmes, education and training programmes, and supporting the Courtyard Apartments at Croí House which offer free accommodation and support for the relatives of those receiving heart or stroke care at Galway University Hospitals.

All abilities (competitive runners, family walkers, beginner joggers, etc.) and ages are welcome, and this year participants will be corralled at the start line based on predicted finish times to allow for a smoother flow. Bring the family and run, walk or jog the 5km in support of Croí. The run will be chipped timed and everyone will receive a medal!

“This is our 5th year on the Prom and we want to make it even more special for our participants. Expect a lively and music-filled start line this year, and we’ve designed a special 5th anniversary sleeved running top for registrations. Each entry makes a huge impact to the work here at Croí, and the run allows us to continue our community work in heart and stroke prevention,” says Christine Flanagan, Director of Fundraising at Croí.

Regular entry is €35, with discounted entry for students, youth and over 65s. Under 12s are welcome for free, but strictly must be under the supervision of an adult. Registration is open at www.croi.ie/nightrun. Join us and help Croí continue to lead the fight against heart disease and stroke in the West of Ireland.

Galway Night Run
5TH ANNUAL

Proudly supported by Evergreen Healthfoods.

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