INTERNATIONAL HEART SPASMS ALLIANCE

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INTERNATIONAL HEART SPASMS ALLIANCE Educate - Inform - Enlighten! We're a group of patients working with patients, clinicians and researchers to raise awareness on ANOCA/NOCAD.

International Heart Spasms Alliance (IHSA) is dedicated to supporting those affected by unseen heart issues. IHSA is a global initiative lead by experts through experience. These are patients who are living with coronary vasospasms and microvascular angina, while also working in a collaborative equal partnership with clinicians. IHSA serves both the patient and medical communities by educating, informing, and enlightening them to help achieve earlier diagnoses, better treatments, and support research into these conditions. A common thought, purpose, and goal brought us together. We may have been strangers from around the world, but our paths were destined to cross. In the span of five years, different Facebook support groups we created and participated in united us in a common goal: to do better. We have different backgrounds and experiences, but this condition appears to be as elusive as a unicorn in fairyland.

“ ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses can Leave Lasting Mental Health Harms” by Tara Haelle; Medsca...
30/10/2026

“ ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses can Leave Lasting Mental Health Harms” by Tara Haelle; Medscape, June 03, 2025

The product of this type of invalidating leads to healthcare avoidance, depression, self doubt and years of compromising health. Many of us understand this long road to a true diagnosis! In this article average time frame was over 6 years. Sounds about right comparing to the ongoing IHSA “Your Heart Speaks” surveys where participant averages came to 2-5 years.

In endotypes we have hope now. Still. So much to do and proper testing is not always available! Yet, we DO have clearer pathways and more educational reinforcement and research than ever!

“Healthcare Interactions With No Known Diagnosis: The Fastest Growing Type of Medical Visit”

its not hard to believe. Often it feels there can be more questions than answers in healthcare. We are complicated beings. However? Remember. In our situation, there is an ongoing interest in the NOCAD realm of heart care now. Coronary Microvascular Dysfunction and Vasospastic Angina are much more known clinically than even a few years ago. We have research to back us up and centers of excellence that diagnose and treat.

Always use resources like on our website. You can print out Info or share QR codes with your medical partners!

❣️NOTE: We are working on a support section for myocardial bridge and Takotsubo as well!

PDF downloadable info link:
https://www.internationalheartspasmsalliance.org/wp-content/uploads/2022/02/IHSA-flyers.pdf

Link to Medscape article -
https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
❤️You may need to share email to view or already have an account.

Survey Participants: You get to see the results first! survey 5 results are in your email inbox NOW!Once again we thank ...
29/10/2026

Survey Participants: You get to see the results first! survey 5 results are in your email inbox NOW!

Once again we thank the “Your Heart Speaks “ patient survey participants for another amazing turn out for completing these important ongoing surveys. Your voices have been carried to be presented at cardiology conferences around the world!

THANK YOU! We continue to have an average 80% return rate and that means YOU ALL are being heard in detailed ways.your Voices are importantly to help shape what’s next for patients.

Survey 6 is also there in same email to participate in and complete. Your are helping fill in important info gaps. Researchers and clinicians need to know what you experience to better understand and help you as a patient.

Haven’t even started and are new to this?
Start here!! START RIGHT NOW! With this link below.
These are ongoing and very important to share with the community. Please get involved. Your voices matter!

Start with survey 1 if new and you can catch up!
They are not lengthy and you can do them at your own pace.

https://surveys.adelaide.edu.au/redcap/surveys/?s=CNRTHX7NFTKCWAM7

These are vetted through ethics, stored safely and worked on over months with the research team at The University of Adelaide (now Adelaide University).
Thank you Sarena Pryor for heading this and keeping everything on track.

29/10/2026

YOUR voices MATTER

Your Voice Matters Post Series Through engagement within how care is laid out, being involved in research, working along...
28/10/2026

Your Voice Matters Post Series

Through engagement within how care is laid out, being involved in research, working alongside your peers in patient centered non profits and commenting as a patient on current aspects of med tach and clinician innovations? YOU can DO a Lot! It can at times be just that comment or thought that spurs a better understanding and drive to help change for the patient population.

Day 3
Through Advocacy & Education:

Driving Systemic Change
Individual stories provide the human face that motivates researchers, policymakers, and institutions to act. When you share in public forums, policy making arenas and how you vote can affect the future.

Participate in patient-centered research:
Join registries, clinical trials, and biobanks. Your patient reported outcomes (PROs) provide scientists with the real-world data needed to update clinical guidelines and establish distinct medical billing codes.

Collaborate with non-profits and local education:
Volunteer to help advocate alongside patient advocating non profits that are local or within medical systems that encourage patient support. You may share your testimonial in person or online for cardiovascular foundations, patient advocacy networks, and international ANOCA awareness campaigns. When you participate in IHSA’s “Your Heart Speaks” ongoing surveys or other patient centered surveys, you are directly a part of what motivates researchers and clinicians. You may even consider becoming a formal advocate through organizations who train patients or need volunteers to give of their experience or time. For example, American Heart Association, European Heart Network, WomenHeart, Her Heart, Stitchting VrouwenHart, Mended Hearts, Heart Life Foundation and more - check in your country.

Engage directly with medical innovators:
Comment on, translate, or share the work of pioneering cardiologists who focus on non-obstructive heart disease. Letting researchers and medical tech companies know that their innovations directly impact patient quality of life encourages continued investment in the field. Comment on sites or posts.

Your Power. Your Voice.

Your Voice Matters Post Series Day 2 On Digital & Social Platforms: Turning the Invisible into a Visible Voice!Publicly ...
27/10/2026

Your Voice Matters Post Series

Day 2
On Digital & Social Platforms:
Turning the Invisible into a Visible Voice!
Publicly sharing your journey helps dismantle the medical gaslighting that many ANOCA patients face. You can do this on your own accounts or submit stories to IHSA to share on the website. You can even choose to be anonymous if public sharing feels not right for you, yet you feel pulled to share. Ask by messenger for details or inquire to [email protected]

Amplify cutting-edge research:
SHARE our posts and tag peer-reviewed studies, consensus documents, and new diagnostic technologies (like advanced cath-lab microvascular measurements and Vasospasm being recognized now in Primary MI in the 5th Universal Definition of Myocardial Infarction). By linking your personal story to emerging science, you help legitimize the condition in the public eye. Every time you share our posts or ones with valid criteria, it may be seen by someone who needs that information!

Use targeted hashtags: Connect with the global community using established tags like , , and to ensure your story reaches patients who are still searching for a diagnosis.

Use Your power. It’s Your Voice. It Matters.

Australian Women! As a partner of Her Heart Charity and Western Health, we would like to share this National initiative ...
27/10/2026

Australian Women!

As a partner of Her Heart Charity and Western Health, we would like to share this National initiative with our heart family who reside in Australia!

The “Every Woman’s Heart” survey is a national research initiative led by Professor Rochelle Wynne in partnership with Western Health, the Australian Cardiovascular Alliance, and the James Lind Alliance.

Short Survey for Women in Australia
https://researchsurveys.deakin.edu.au/jfe/form/SV_09s3Z0rxGGrhJ0a

About Western Health
https://westernhealth.org.au/research/heart-health-research-women

Your Voice Matters Post SeriesA single patient's voice matters in ANOCA (Angina with Non-Obstructive Coronary Arteries) ...
26/10/2026

Your Voice Matters Post Series

A single patient's voice matters in ANOCA (Angina with Non-Obstructive Coronary Arteries) because it transforms an invisible, subjective experience into recognized, validated medical visible reality! Remember! We ARE the LARGEST STAKEHOLDERS.

This week, we go over aspects of your important voice! Here is specifically how, as a patient, you can impact care. Let’s start with diagnosis and your doctor’s appointment. Words matter.

1. Inside the Exam Room (Clinical Advocacy)

Pivot from "Clear" to "Functional":
If told your coronary arteries are "clear" or "normal," use your voice to ask: "We know there are no large blockages, but how are we testing the function and flow of my smallest blood vessels?" (1)

Use Concrete, Standardized Language:
Bring a structured symptom diary. Instead of just saying "I feel bad," state exactly how the pain behaves: "I experience crushing, squeezing pressure behind my breastbone that frequently wakes me up at 3:00 AM and is relieved by nitroglycerin."This specific phrasing points directly toward vasospastic or microvascular patterns.

Request Specific Diagnostics:
Explicitly advocate for functional testing, be it invasive or non-invasive. Examples of such are a functional coronary angiogram or specialized cardiac MRI or cardiac PET scan, which are required to differentiate and diagnose these conditions.

Backed up info: “Microvascular Angina and Microvascular Dysfunction – Emerging Insights and Interventions” - a great overview clinically.
(1) https://www.bcis.org.uk/education/fellows-corner/microvascular-angina-and-microvascular-dysfunction-emerging-insights-and-interventions/

ANOCA Patients Your Voice MattersA single patient's voice matters in ANOCA (Angina with Non-Obstructive Coronary Arterie...
25/10/2026

ANOCA Patients
Your Voice Matters

A single patient's voice matters in ANOCA (Angina with Non-Obstructive Coronary Arteries) because it transforms an invisible, subjective experience into recognized, validated medical reality! We ARE the LARGEST STAKEHOLDERS.

This week IHSA will have a Post series about Your power. Your Voice.
How to affect your care and what you can do for more awareness. It is part of living well with ANOCA. USE YOUR POWER AS A PATIENT.

Patients! Be Informed of the ‘Whats & Why!’“Acetylcholine Provocation Testing for Coronary Vasomotor Disorders” Check ou...
23/10/2026

Patients! Be Informed of the ‘Whats & Why!’

“Acetylcholine Provocation Testing for Coronary Vasomotor Disorders”
Check out the full text and illustrations by using link after authors.
Andrea Caffè, Francesco M. Animati, Rocco A. Montone. Acetylcholine Provocation Testing for Coronary Vasomotor Disorders. Rev. Cardiovasc. Med. 2026, 27(9), 52151.https://doi.org/10.31083/RCM52151

In case You Wondered?
What is an Acetylcholine (ACh) Test?
Doctors inject a small, safe amount of a chemical called acetylcholine directly into the coronary arteries during a heart catheterization. It tests how the blood vessels react. It answers the question- Do they relax normally or go into a tight spasm?

What Does this Test Find?
Epicardial spasm: Spasms in the main, large heart surface arteries (Vasospastic Angina).
Microvascular spasm: Spasms in the microscopic tiny blood vessels.
Endothelial dysfunction: The inner lining of the blood vessels fails to tell them to relax properly.

Why Does Testing Matter?
Accurate diagnosis: It pinpoints the exact cause of the pain instead of leaving it a mystery.
Better treatment: Knowing the exact cause lets doctors prescribe personalized medicine (such as calcium channel blockers or vasodilators) that actually target spasms rather than standard blockage treatments.
Better outcomes: Specific treatment reduces repeat chest pain and can improve daily quality of life.

Thank you to the researchers for working harder to share this information. We need more awareness for not only patients but our partnering clinicians.

“SGLT2 Inhibition Promising in ANOCA Patients With Microvascular Dysfunction”“Angina symptoms improved in the 11-patient...
21/10/2026

“SGLT2 Inhibition Promising in ANOCA Patients With Microvascular Dysfunction”

“Angina symptoms improved in the 11-patient study, with signs that endothelial dysfunction may reverse with treatment.”
by Caitlin E. Cox, tctMD , OCTOBER 16, 2026

“Patients who have angina with nonobstructive coronary arteries (ANOCA) that involves microvascular and vasomotor dysfunction can experience “clinically meaningful” symptom relief by taking empagliflozin (Jardiance; Boehringer Ingelheim), early data suggest.
Researchers also found that use of the sodium-glucose cotransporter 2 (SGLT2) inhibitor appeared to reverse various measures of endothelial dysfunction.

Led by Danielle N. Tapp, MD (The Christ Hospital, Cincinnati, OH), the open-label pilot study was published recently in Arteriosclerosis, Thrombosis, and Vascular Biology.”

Prof. Vijay Kunadian from New Castle University, UK- “SGLT2 inhibitors “have always been on my radar” as a possible solution for refractory angina in this population, said Kunadian. The new study, though small and not definitive, “is a good start on which we can base some large studies.”

The shifts in quality of life it observed are indeed relevant in ANOCA, she stressed. “Symptom relief is so, so important. That’s what is so debilitating for these patients.” (Prof Kunadian)

Dr. Odayme Quesada from Christ Hospital - “agreed that it’s important to be cautious. “This is just a pilot study,” she said, noting that she does not yet use SGLT2 inhibitors for angina. “I want to be able to prove that it works rather than just giving it to patients. We need to see the data.”
Overall, though, Quesada sees few potential downsides to SGLT2 inhibitors, given that large studies in other populations have shown these are “ well-tolerated drugs with a very low risk profile.”

Full article: https://www.tctmd.com/news/sglt2-inhibition-promising-anoca-patients-microvascular-dysfunction

Check out details in the Pilot study:
https://www.ahajournals.org/doi/abs/10.1161/ATVBAHA.126.324735

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