The International Heart Spasms Alliance (IHSA) is a patient-founded website with a mission to “educate, inform and enlighten” patients and clinicians about the family of heart conditions defined by ongoing chest pain without permanent narrowing of the coronary blood vessels. These conditions include (but are not limited to) coronary vasospasm and microvascular angina and have the reputation of being notoriously difficult to diagnose, with inconsistency of symptoms across presenting patients. Diagnosis, therefore, can be a slow process and finding the right treatment is not a one-size-fits-all approach. Four patient advocates (from as far afield as USA, Australia and the UK) discovered one another through their similar Facebook support groups and decided to join forces and pool resources to create one dedicated online space, designed in such a way that patients (experts by experience) and clinicians (experts by training) could collaborate in an equal partnership – sharing up-to-date information, supporting research and placing patients firmly at the centre of their own treatment plans in order to achieve the best possible quality of life via a holistic approach.
UK-based IHSA founder Sarah Brown contacted me recently to let me know about the IHSA’s website. Sarah (finding time in her busy schedule as a volunteer patient advocate for various organisations, including the British Heart Foundation and the National Institute of Cardiovascular Outcomes Research) has previously contributed to Heart Haiku zine, writing about her experience of living with coronary vasospastic angina. This piece by Sarah features in the issue 4 of the zine: Symptoms.
Sarah shared her poem with the other IHSA members who, already convinced of the importance of creativity and artistic expression, decided to launch their own Creative Corner – a space for patients to share poetry and artworks inspired by or commenting on their experience of living with coronary vasospasm and microvascular angina. As well as posting work of their own, the IHSA members reached out to Facebook contacts from the heart-spasm community and began building a collection of written and visual artworks.
I was THRILLED to learn that the Heart Haiku zine had played a part in helping to spawn another creative space for people to share their experiences of living with a heart condition (I really do believe creative output is a hugely helpful way to process and consider these often difficult experiences) but was even more thrilled when I followed the link and saw the wonderful work that had been posted already.
R.A. Smoller’s incredibly beautiful painting of dying irises in a vase is accompanied by the following powerful explanation of the piece’s creation:
Sarah explained to me that this piece, titled ‘Pain Uplifted’ and created by one of the association’s four founders, is particularly important to the group as they all relate strongly to the image’s depiction of rising up from the pain they all experience. They asked Annette Pompa (the piece’s creator) to consider sharing this work on the IHSA website and she wrote the following words to accompany the image, describing the concurrent potential benefits of creative output to both artist and audience:
I’m always excited to hear about heart-related creative output so do get in touch to let me know if you discover (or create!) any. And if you have a condition like coronary vasospasm or microvascular angina and fancy creating a piece of your own, I know the International Heart Spasm Alliance would love to consider it for inclusion on their site – just visit their Creative Corner to find out how to submit your work.
This month the blog has a focus on all things Friends & Family, tying in with the theme of the zine. I love the way the patient founders of IHSA, from across the globe, have come together via the common ground of their heart conditions, forging friendship and creativity as well as a place to find support and information online. Have you made new friends because of a shared heart condition? What are your thoughts on online friends? If you fancy sharing your thoughts on this (or any other) aspect of Friends & Family, perhaps you would consider contributing a haiku to this month’s zine? Full details available here.