Patient perspectives: Katherine Leon
Rebecca Aris interviews Katherine Leon
Spontaneous Coronary Artery Dissection (SCAD) patient Katherine Leon shares her experience with pharmaphorum and explains how she helped to set up a clinical trial at the Mayo Clinic for SCAD patients in this under-researched area.
Heart attack symptoms can be pretty scary, but when no cause is attributed to them it can be very worrying. This is what happened to Katherine Leon who eventually received her diagnosis of Spontaneous Coronary Artery Dissection (SCAD), only to find out that there was no research in this area.
Determined that progress should be made in this area, she found other patients online and worked with the Mayo clinic to set up a trial in this area.
Here she shares her experience….
RA: Katherine thank you for joining me. Could you just start by sharing your patient experience and how you got diagnosed?
KL: I was your typical female in that I really hadn’t had too many issues throughout my life.
At the age of 38, a few weeks after I gave birth to my second son, I suffered a spontaneous coronary artery dissection (SCAD), – a tear in the lining of the artery that causes blockage, and can either lead to heart attack or sudden death.
I started having heart attack symptoms, so I went into hospital and was sent home and told to control my asthma and get my gall bladder checked. Later that week I was having severe chest pain. My husband rushed me to the hospital and this time they did a cath and saw the blockage.
Unfortunately, we don’t really know how many women SCAD affects, but I was lucky in my case because it was caught. I had double bypass surgery to reroute the blood flow, because the blockage was at a very critical point where my heart was not getting blood to about half of it.
RA: How did you feel then when you found out that there was no research in the area of spontaneous coronary artery dissection?
KL: That was another slap in the face, having gone through the trauma of open heart surgery.
I went to my follow-up appointment and my doctor told me I was lucky for surviving as it was a really rare condition. I was waiting for my little piece of paper that told me all about SCAD, and the history of it, and why I had it, and what I could to do prevent it again. But I was told that there was no research, there’s nothing to research because patients either die or they’re lucky like me.
To me the fact that nobody else had ever made a big deal out of it was just unacceptable. It made me very determined to try to get some answers.
RA: Do you know who SCAD is most likely to affect?
KL: There is currently a clinical trial underway at Mayo Clinic. Mayo also have retrospectively looked back at its own databases and found 87 SCAD patients. A preliminary study of those patients found that about 20% are men, 80% of women. Of the women, 30% are postpartum or peripartum.
Most are very fit. There are some total anomalies where someone might have one at rest, with no apparent cause. It seems to me like there must be a physical stress to the artery or something related to hormones.
“Unfortunately, we don’t really know how many women SCAD affects…”
But it’s currently being pieced together by research. Anyone around the world can submit their records and their angiogram to be included in the study. Once their SCAD is confirmed they’re sent questionnaires and they participate that way.
The second part of the trial is the genetic component, and you can submit blood to the DNA biobank that they formed. Once they have figured out what they’re looking for then they will analyse the genetic side of it.
RA: Can you please tell me how you became involved with the Mayo heart study?
KL: As I mentioned I set the goal right off that I wanted to get to the bottom of SCAD because I just felt it wasn’t right.
No one I met had ever known anyone else with SCAD, so I started searching online for other people who had the same thing. Eventually, I found womenheart.org which is a non-profit here in the US, and they had their own online community.
I kept chatting online within that community and eventually more people would find the conversation through Google. After several years I decided to be more involved with WomenHeart, I really wanted to educate women about heart disease.
WomenHeart have a symposium every year called ‘the Science and Leadership Symposium’, at the Mayo Clinic. Doctor Sharonne Hayes is the founder of the women’s heart centre at Mayo, and also of this symposium. She seemed like the right person to approach, because she was thoroughly interested in women’s heart conditions.
I was really hoping to convince Mayo to do the research.
Doctor Hayes is a wonderful person, and she listened and was intrigued that I had met other patients online with SCAD, because the challenge with research is reaching patients, particularly if it’s something that’s perceived as rare.
She was willing to give it a try. The first step was a pilot project, and that was easy to fill once approved, because I already knew people who wanted to be researched on the WomenHeart online support community.
“…the challenge with research is reaching patients, particularly if it’s something that’s perceived as rare.”
I think harder was having our records, that took several months in some cases for our hospitals and doctors to get everything co-ordinated and sent there.
The pilot itself was more to prove that you could do this type of thing through social media and electronic data transfer. Once that proved successful they announced a formal clinical trial on September 1st of 2011.
That was very exciting, because they are right up there on clinicaltrial.gov you could access enrollment for the virtual registry, and then you could also see information about the DNA biobank. Research is finally underway with several hundred participants, it was a thrilling experience to be a part of.
RA: When you found other patients with the same condition how did your experience compare with theirs?
KL: Well that still is an interesting thing, because the first people I met only intrigued me more. I assumed that I was going to hear my story exactly, that I would meet people who had just had a SCAD because they had a baby. That was my expectation.
But the first stories that I heard were women who were older, and their SCADs were not related to pregnancy at all. They were in other parts of the world. The first two I spoke with hadn’t had to have surgery but had been given medication.
Later I met people who had stents, but it was totally varied. The one thing that we all experience is that we’re dismissed right off the bat because we’re so, ‘healthy’. We don’t have the cardiac risk factors you would expect for someone who just had a heart attack, we generally have low blood pressure, low cholesterol, a healthy body weight, healthy diet for the most part.
So it was typical for many of us as patients to be dismissed and misdiagnosed, however, now there is an increased awareness of the problem.
RA: What changes would you like to see in this area?
KL: Mayo published the retrospective study and as they publish more we’ll see better diagnosis of SCAD at the ER. In the future hopefully they will collaborate with other institutions around the world, and raise more awareness globally.
I’ve been looking into options of ways we can reach out in other languages to try and involve non English speakers. Thanks to the internet you can connect with patients in Vanuatu in the South Pacific with SCAD. Right now our support group is English speaking for the most part.
I would ultimately like to see instant recognition when a young woman comes into the ER, with either vague symptoms like most women have, or classic heart attack symptoms, that this could be a dissection.
“Thanks to the internet you can connect with patients in Vanuatu in the South Pacific with SCAD.”
RA: You mentioned there that you’d like to see awareness raised in this area, how do you think we can further raise awareness of disorders such as SCAD?
KL: We have the WomenHeart online support community on Inspire, it still attracts women and men who find us with Google searches.
We do have a non-profit called scadresearch.org, and we’re newly formed but we just re-launched our website so it has a lot of great information.
We’re hoping that’s going to be a way to draw people together to work towards the common goal and support research wherever it arises.
Mayo is doing amazing things right now, but who knows, if other institutions take this on that would be great too. I’d love the NIH to explore it, but that might be wishful thinking. It would be great to reach everybody from emergency department workers to ambulance drivers, the nursing community, professional organisations, and also the student body as well, to try to truly educate the frontline.
By continuing to fundraise and by building online communities we can raise awareness.
Using technology and using creative ideas, and letting the patient have their say in the process, and in their care, is very important. A lot of times you get the best ideas from the soldiers in the trenches, and good leaders will listen.
“A lot of times you get the best ideas from the soldiers in the trenches, and good leaders will listen.”
RA: What impact do you think the research in this area would have on broader disease understanding?
KL: I think the genetic component opens the door up to all kinds of issues and questions.
We have as a patient group formalised our own theories as we go along. For example, a lot of us have severe migraines, and since SCAD can affect the internal right carotid artery, then maybe there’s some link to migraines.
It seems that every single thing that you look at with SCAD it can lead you in a direction to maybe inform some other health problem. That’s the beauty of the genetic component, that you can research based on our histories and our work ups.
And when you look to the DNA biobank I think that’s when we’re going to be able to say perhaps this was the cause of death in childbirth all these years for untold numbers of women but we just didn’t realise it. I as a layperson can’t imagine what the implication would be, but I just think that who knows what the genetics could show? And that’s why it’s so important to just keep pushing and enrol as many people as possible.
We’ve even discussed that maybe our arteries are too clean, or maybe our bodies process fats and cholesterols differently and that’s why we don’t have plaque. Maybe the structure of our arteries is just weak, or there’s an answer that the genetic information will provide.
There are all kinds of intriguing issues, I hope they get some answers in my lifetime.
RA: Katherine thank you very much for your time today and for your insights and sharing your story, thank you.
KL: Thank you very much.
About the interviewee:
Katherine K. Leon is a woman living with heart disease, having survived a heart attack caused by spontaneous coronary artery dissection (SCAD). In 2009, she collaborated with Mayo Clinic to launch the largest single-center study of SCAD patients by using social media as a means to recruit participants worldwide. The research will analyze data of more than 300 patients, and will be supplemented by a DNA biobank of up to 400 patients and family members.
As a WomenHeart Champion, Katherine promotes improved cardiovascular health at events by encouraging women to take responsibility for their health and to demand respectful, appropriate care. She is active on the WomenHeart online community, hosting a weekly SCAD Café. She is on the board of SCAD Research, a non-profit working to support families affected by SCAD and generate funds to advance research.
How can we raise awareness of SCAD?