Across all the stages of the patient journey, diagnosis is the point at which people with heart disease most need help and support.
But it’s during this time that they are least likely to reach out to advocacy groups like Mended Hearts. That’s according to Andrea Baer, Director of Patient Advocacy and Program Manager at the charity, which supports people with all forms of heart disease, their families and caregivers.
“Diagnosis is the most critical point of anyone’s heart journey. People truly need support, but they don’t automatically reach out,” she said.
“It’s like a trauma period: you go into survival mode. You are not looking to find help, you are just listening to what the doctor says, doing what they tell you to do and going where they want you to go.”
Speaking about receiving her new-born son’s congenital heart defect (CHD) diagnosis, Andrea said she knew all too well what that was like.
Despite this challenge, Mended Hearts does everything they can to make sure people have the information they need – at whatever stage they are ready to ask for it.
Work spans from raising awareness of symptoms and conditions, through diagnosis and treatment, to helping people adjust to living with a heart condition long-term.
Programs include a peer-to-peer heart patient support network of 300 chapters which serves more than 460 hospitals across the United States. While the Mended Little Hearts program offers support specifically for families of children affected by CHD.
“Understanding that emotional place is really important. Peer supporters can say ‘I have done it, you can do it too’,” said Andrea, adding that peer support was pivotal at every step of the patient journey.
Below we illustrate the journey a heart patient may follow, the potential impact and how Mended Hearts are able to help. Of course, everyone’s journey is different and people will have their own experiences. To find out more about Mended Hearts, please click here.