Croí adds its Voice to Global Call to Heart Valve Patients

Among those most impacted by COVID-19 are individuals living with heart disease or with specific heart conditions such as heart valve disease.

“People with underlying heart disease or with certain heart conditions such as heart valve disease are among the most impacted by the coronavirus because of factors outside of their control, but also due to some things under their control,” says Croí CEO Neil Johnson, who has joined a global call for heart valve disease patients and their carers to take as much control as possible of their heart health during this global pandemic.

The global COVID-19 crisis has put an enormous strain on health systems which face the battle of limiting the spread of coronavirus, while at the same time providing the treatment and care that will save lives. As a result of this, healthcare systems across the world are having to change the way they work and how they prioritise, impacting patients presenting with many conditions, including heart valve disease.

The Global Heart Hub, an umbrella organisation for heart patient organisations, is advising those living with heart valve disease and other heart problems that while there may be disruption and delays to appointments and treatments, urgent treatment for conditions such as heart valve disease still needs to be undertaken.

“Many of the indicators that suggest a patient requires early or urgent intervention are symptom driven, so it is crucial that patients monitor their symptoms and report any deterioration to their nurse, doctor or heart specialist,” says Wil Woan, chair of the Global Heart Hub Heart Valve Disease Patient Council. The Global Heart Hub’s Heart Valve Disease Patient Council, of which Croí is an affiliate, has resources to help patients track their symptoms and he is encouraging patients and their carers to use them (

Referring to factors under a patients control, Croí has added its voice to the global call in response to the concerning trend of some heart patients with severe symptoms or severe disease avoiding hospitals, not attending appointments or not contacting the emergency services on time for fear of contracting COVID-19. Croí’s Neil Johnson says: “By not seeking or receiving urgent treatment, these patients may be putting their lives at greater risk. We urge these patients to monitor their symptoms closely and report any deterioration. We are aware that this is a worrying period for patients across the world whose concerns about COVID-19 and potential isolation from loved ones is hampering their willingness to seek appropriate medical advice and treatment.”

Locally, Croí, a founding member of the Global Heart Hub, is providing support to patients and their carers through this challenging time. The Croí health team is available by phone Monday to Friday to provide information and support to those living with heart disease, stroke and obesity.

The Global Heart Hub is the umbrella organisation for heart patient organisations across the world and one of its core objectives is to create partnerships, share information and to leverage the power of the patient voice to deliver the best outcomes for all patients across the world. In the case of heart valve disease, where severe disease requires treatment, the Global Heart Hub is calling on healthcare systems and physicians to ensure that those who need urgent treatment still receive it, even in these challenging times.

“It is important that, together, we make clear that when the COVID-19 crisis relents, heart valve disease patients around the world will need and should receive treatment. Cancelled or delayed heart valve surgeries or interventions will need to be prioritised because we know that early intervention is optimal in returning patients to a good quality of life,” Woan, Global Heart Hub.

Click below to download the new heart valve disease Symptom Tracker resource.

Heart Valve Disease Week at Croí!

It was a busy time for Croí this European Heart Valve Disease Awareness Week!

Team Croí were out and about in the West of Ireland with our Heart Valve Disease stand, conducting surveys on heart valve disease awareness amongst the public and providing information on the risks, diagnosis and treatment of heart valve disease. Over 300 surveys were collected which will go on to inform our work and awareness of heart valve disease in Ireland. We also identified several new and engaged patients who will join our heart valve disease patient advocates.

The burden of heart valve disease is rising 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. The goal of European Heart Valve Disease Awareness Week is to raise awareness on the prominence of heart valve disease and to encourage people to get checked for symptoms of it.

Visit Croí’s information page to learn more about heart valve disease.

Croí’s Boost to Medical Training at NUI Galway

The use of a stethoscope remains a key step in detecting heart problems, especially heart murmurs and Heart Valve Disease. Local heart & stroke charity Croí is leading the way nationally in raising awareness of Heart Valve Disease as part of ‘European Heart Valve Disease Awareness Week’ which takes place from September 16th – 22nd.

To mark the 2019 awareness week, Croí is presenting the School of Medicine, NUI Galway, with the latest technology for teaching the skills of stethoscope examination.

Pictured right, at the presentation by Croí of a SAM high fidelity cardiorespiratory auscultation simulator to the School of Medicine were, from left: Mr. Mike Smith, Clinical Skills and Simulation Technician; Prof. Gerard Flaherty, Programme Director for Undergraduate Medicine and the MSc in Preventive Cardiology; Mr. Neil Johnson, CEO of Croí; and Mr. Kevin O’Reilly, Chairperson of the Croí Board.

Image credit: Joe Shaughnessy

Croí’s Boost to Medical Training at NUI Galway (2)

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 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 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.


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.

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:

Heart Valve Disease – a brief introduction

Written by Croí’s Cardiovascular Nurse Specialist, Patricia Hall

Cardiovascular disease is an umbrella term for all types of disease that affect the heart and blood vessels. Most commonly it refers to coronary heart disease (angina and heart attack) and stroke. However, there are other heart conditions that can affect your heart’s valves, muscle or rhythm.

Heart valve disease is when one or more of the valves in your heart become diseased or damaged, preventing them from opening or closing properly. You have 4 valves in your heart (2 on the right, 2 on the left) that keep blood flowing in the right direction.

These valves can be affected in 2 ways:

  1. the valve area can become narrowed, not opening fully and causing an obstruction or blockage to the flow of blood. This is called valve stenosis; or
  2. the valve may not close properly allowing blood to flow backwards in the wrong direction. This is called valve regurgitation or incompetence.

Common causes of heart valve disease include congenital heart birth defects, infections and degeneration over time. Due to wear and tear or high blood pressure, the prevalence increases with ageing.

You may not experience any symptoms of heart valve disease for many years or they may seem vague and non-specific.

Common symptoms can include:

  • shortness of breath particularly on exertion;
  • fatigue or feeling excessively tired;
  • swelling of the ankles;
  • chest pain or tightness;
  • dizziness or fainting.

Sometimes valve disease is only discovered when your doctor listens to your heart with a stethoscope and hears an abnormal heart murmur (heart sound).

Many people with heart valve disease can live a normal life for many years, with little treatment. In some cases the valve may need to be repaired or replaced. This depends on which of the valves is affected, the severity of your condition and if it is getting worse. Increased awareness and early detection of this condition can mean heart valve disease is entirely treatable. Lifestyle changes and medicines often can treat symptoms successfully and delay problems for many years. Eventually, though, you may need surgery or a less invasive procedure to repair or replace the damaged valve.

Remember, heart disease – and heart valve disease in particular – is easier to treat when detected early, so keep an eye on our website for a full article on heart valve disease coming shortly.

Embracing innovation and the power of positive ageing

By Neil Johnson, Chief Executive of Croí, the West of Ireland Cardiac & Stroke Foundation and the National Institute for Preventive Cardiology

In September, I chaired a European Parliament roundtable with MEPs and five other cardiac patient organisations on Heart Valve Disease and the Power of Positive Ageing.

Our message was simple – heart valve disease is a barrier to active and healthy ageing: early detection, diagnosis and treatment with innovative medical technologies enables positive ageing. Equal access to these technologies was at the core of our discussion.

Heart valve disease is a common and blameless disease of ageing. Around 13% of people aged over-75 have some form of the disease. It is both life-limiting and potentially life-threatening; 50% of people with severe aortic stenosis, the most common form of the disease, will die within 2 years if not appropriately treated.

Yet, it does not have to be like this. Surgical heart valve repair or replacement are proven treatments and we are now living through a period of exciting and impressive advances in treating the disease with minimally invasive and keyhole techniques.

Repairing or replacing a diseased valve can, in effect, cure the condition. Blood will once again flow through the heart the way in which nature designed it and patients can anticipate a better and longer quality of life.

This is where the Power of Positive Ageing comes in. The ageing demographics of Europe are frequently viewed as a negative thing, whereas we believe and know that healthy older people contribute significantly and in very positive ways to our families, communities and economies.

After all, we know that many people over the age of 65 care for their partners or look after grandchildren so that their own children can go to work.  In the UK, Age UK estimates that this care is worth £15bn to the country’s economy.

Here in Ireland, our senior population are literally running our communities by volunteering.  The Healthy and Positive Ageing Initiative (HAPAI) announced recently that 12% of over-70s volunteer in their communities weekly, while a further 19% volunteer at least monthly.  Similarly, in France 36% of those over 65 volunteer in an association according to a report from Bénévolat.

Economically, older people actually play a key role. According to Spain’s Centre for Sociological Research (CIS), 37.7% of people believe that one of the greatest contributions of grandparents to Spanish society is to help their families ’economically’, while over 25% of people recognize and highlight their role in ’keeping the family together’

For me, it is self-evident that keeping our elderly population in good heart health with innovative medical technology is one clear solution to the challenges we face across Europe. Ensuring that patients have access to these technologies is central to this solution, but unfortunately, access varies widely across Europe. For example, in Denmark, Austria and Switzerland, you are much more likely to be treated with innovative technologies than in my own country.

This is why a European alliance of heart patient organisations have called for action from European healthcare systems to ensure that patients have equal access to effective heart valve disease treatment wherever they live.  Achieving this will allow us all to embrace the benefits of the Power of Positive Ageing.


Originally posted by MedTech Europe on October 11, 2018.