FAACT's Roundtable

Ep. 237: Mast Cell Disease Society - Finding Support

• Caroline Moassessi • Season 5 • Episode 237

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We’re diving into the world of mast cell diseases, equipping you with the knowledge and tools to navigate this condition. Whether you're a patient, healthcare professional, or a caregiver, this conversation, led by Jessica Fraser, Executive Director of the Mast Cell Disease Society, will guide you on how to find resources, support, and community. 

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie blog.

And I am FAACT's Vice President of Community Relations.

Before we start today, I would like to say thank you to Blueprint Medicines for their kind sponsorship of the FAACT's Roundtable Podcast. We're diving into the world of mast cell diseases, equipping you with the knowledge and tools to navigate this condition,

whether you're a patient, healthcare professional or a caregiver. This conversation, led by Jessica Fraser,

executive director of the Mast Cell Disease Society, will guide you on how to find resources, support and community.

Welcome back, Jessica, to FAACT's Roundtable Podcast. This is an exciting day because you always bring us really important information that's a little harder to find than just the average thing.

So thank you so much for being here.

Jessica: Thank you so much, Caroline. It's great to be back. I'm always, always happy to do your show.

Caroline: Well, that makes me happy to hear.

So now let's start our conversation by first learning about mast cell disease and what it is and who it impacts. So then that way we all start with a baseline.

Jessica: Absolutely. I think that's a great approach.

So mast cell diseases are a group of rare diseases that affect the immune system.

They have an involvement with a cell in your body called a mast cell. Some people are don't even know they have a mast cell, but that's a cell in your body that's part of your immune system.

And patients who have mast cell diseases,

either they have too many mast cells and they're not behaving properly, or they just have mast cells that are the right number, but they're really, really not behaving properly.

And so patients can experience a range of symptoms that from flushing in hives and itching to GI distress,

brain fog, and in some cases, severe reactions like anaphylaxis.

And these diseases can impact really people of any age or gender. There are some more common diseases for certain groups. So for example, cutaneous mastocytosis primarily impacts children,

but not exclusively. And, but so really just about anyone can be affected.

Caroline: And is it at any time during life? Does it usually get diagnosed in, you know, pediatric ages and stages or adult?

Jessica: It can be diagnosed and found at any time during life. So we certainly, we have seen tiny little babies be diagnosed with cutaneous mastocytosis.

And we have seen, you know, people in their early teens, in their 20s be diagnosed with things like indolent systemic mastocytosis or mast cell activation syndrome. And then even older, you know, my personal family member who had aggressive systemic mastocytosis was diagnosed later in life.

So it can really happen at any point in life.

Caroline: Can you just take a quick minute? You just mentioned different types of mast cell diseases. Can you just review just a couple of them that you just mentioned?

Jessica: Sure, absolutely. So we have cutaneous mastocytosis,

and that impacts the skin. So that is when you have mastocytosis on your skin, and that is really the only organ system affected.

And again, that's primarily children, but could be adults. And then we have systemic mastocytosis, and there are several different variants of that.

And that means that you have mastocytosis in more than one organ system in addition to the skin. So you may have skin and gi,

you may have skin and bone or GI and bone,

but there's more than one organ system in addition to the skin or besides the skin impacted.

And then there's mast cell activation syndrome, which is when you are having the symptoms of mast cell activation in ways that are not,

you know, typical and hard to predict. And those are the ones that you hear about the most.

Caroline: Thank you. That's very helpful. So now your organization, the mast cell disease society, offers a wealth of information. It's been so fun watching you grow.

So can you talk about your organization and then just what exactly do you all do?

Jessica: Absolutely, I would love to. So the Mast cell disease society is a patient advocacy organization. We're focused on providing support to patients and their families.

We also provide educational opportunities for healthcare providers around mast cell diseases.

And we also fund and conduct research into the diseases and their treatment and how they function and how they work.

And then finally, we spread awareness. So we want more people to be aware of mast cell diseases.

And all of this is in an effort to help shorten the diagnostic journey for patients, to improve the treatment options that are available to them, improve the care that they're receiving.

And then, of course, hopefully, one day, we hope there's a cure for these diseases. So that's what we do. We've actually been around for a long time,

nearly 30 years. Now,

in the last few years, we've just experienced a very big growth and we're very excited to be able to provide all of these resources to patients and listeners.

Caroline: I just want you to know in the show notes, I will have links to all the website information and things that we talk about and opportunities coming up. So make sure you take a look at the show notes.

Now let's turn to the patient. So once they're diagnosed, then what?

So they have all these conditions, they see their doctor,

they get diagnosed, what do they do next? Like, what types of resources do they need? And again, where can they find this?

Jessica: Absolutely. This is such an important question because mast cell diseases can be incredibly overwhelming.

I mean, a lot of our patients have a very long diagnostic journey, symptoms of diseases that are other diseases. So it can sometimes take a while to sort of rule out other things.

And then you finally get to this place where you have a mast cell disease diagnosis and it's, it's overwhelming. And so I of course might be a little bit biased here, but I think the best first stop is our website, TMS for a cure dot org.

We have so many resources and educational materials there. We have explanations of each of the diseases so you can learn more about them.

We have some great videos that explain the basic biology of the diseases. What is a mast cell? Why am I reacting this way? What's causing these reactions?

So we have that basic disease biology there. We have guides and toolkits. We have an ER response plan. We have an emergency room alert card that you could take with you and have in your pocket at all times.

We have a patient guidebook where you can actually like print that out or it's even fillable online. And you can work with your physician to fill out all of this information about how mast cell disease is infecting you specifically.

And then your physician can sign it. And it's kind of like the guide to your mast cell disease.

We have webinar library with dozens of videos and we have virtual support groups that meet each month.

So last year we had nearly 200 support groups held over the course of 2024.

There were over 1,000 participants who participated in these support groups. And so that's just like a very thriving, wonderful way to get some peer to peer connection. They're all virtual.

And then we of course have a very vibrant private Facebook community with where you can get tips and guidance and things like that. So there's so much to dig into our page.

I should also mention that we try to share relevant resources from Other groups like fact,

so we wanna be a hub for information. And FACT has amazing resources on their website as well. And so we try to make sure that our patients are seeing the ones that are relevant to them.

Caroline: That's a lot of information, which is wonderful. But how many people out there have mast cell disease in the US it's.

Jessica: Really, really hard to, to get down to a number because one, because there's so many different disease states,

and two,

because it is a rare disease and each of the disease states have like a different degree of. Of rarity, so to speak.

So it's tough to get to a number. But I mean, I know that we have. Our community is well over 20,000 people, and I'm sure we're just a fraction of, of the total community is out there, which is why I'm so grateful to be able to do things like this,

to try to see if there's patients out there who don't know about us, that they can hear your podcast and find us. So thank you so much.

Caroline: That's a lot of people.

So now if a listener who's participating with us today as a parent or caregiver, so they're taking care of a child,

do you have any specific tips for them? Cause it's a little different when you're the patient yourself and you can wade through all this information. But do you have any extra special tips for parents?

Jessica: Sure. I think this is really tough and it does sort of depend on what type of mast cell disease the child has, I think depending on what the needs of the child are.

But I would say, you know, of course, educate yourself about your child's specific mast cell disease and you can do that just like a patient would on, on the resources that I described above.

But we also do have pediatric resources on our site specifically. I mean, I think the,

the two that I would point to that I think are probably good starting points, especially if your child, you know, if their particular symptom might lead them to the emergency room.

We have a guide to advocating for your child in the ER specifically.

So that's an important resource to look at. And then also many of the children of our, you know, many of our pediatric patients who have mast cell diseases,

they need some special accommodations in the classroom to be safe at school, just like with other food allergy children. Similarly,

theirs might not be food related. It could be chemicals. It could be scents and odors.

It could be being around insects that might have a certain type of venom.

And so parents might want to develop a 504 or an plan or an individualized education plan for their child. And we have some resources on our pediatric section about those plans.

So I think those would be the good. Those would be my top two places, I think, to start.

Caroline: And again, listeners, I'm going to put those in the show notes so that way you can find your way around the website pretty fast and pretty easy.

So now let's talk about our healthcare professionals who might be listening today.

What kind of resources are there for them?

Jessica: We definitely care a lot about this healthcare professional community.

We know that so many of our patients, when they begin their diagnostic journey, they're not going to an a mast cell disease center of excellence for their first like appointment trying to figure out what's wrong with them.

They're seeing maybe an ER doctor or their family physician or a dermatologist. They're seeing a community professional,

community provider. And so we really want to make sure that those providers have access to information as well. So healthcare providers also have a special section on our website with lots of information that is just for them.

We're still in the process of taking applications for a new resource that we're launching, which is a hub for physicians to be able to get information that is really only for healthcare providers.

So that will be an additional like benefit to that section of our website. But we have information around testing and treatment.

So I think what healthcare providers need to know,

especially community providers, is how to screen for patients that should be tested for mast cell disease. So those resources are there,

what tests to order and how those tests should be conducted, because the way the tests are done is really important.

And then once they have proper testing, then it's important to connect those patients with either a center of excellence or a reference center in mast cell diseases. And there's an organization called the American Initiative on Mast Cell Diseases, or aim,

that is a physician group. And they have a list of centers of excellence that patients can be referred to or a specialist, such as an allergist or a hematologist.

And then finally we do have a, what we call our Tele Echo program. It's a CME program that's virtual. We do it twice a year. When this airs, it will be over for the spring cohort, but we will be enrolling for our fall cohort.

So in the fall there will be a series of seven CME accredited virtual programs that healthcare providers can attend and learn more about how to screen for mast cell disease, how to test for mast cell disease, and then how to treat the patients who they diagnose with a mast cell disease.

Caroline: This is incredible. And would it be safe to say that if a listener wants to share this information with their healthcare professional, that's absolutely acceptable and not deemed being too pushy?

Jessica: No, we encourage it highly. In fact,

I will make sure this gets in your show notes too.

We have a blog post where we have drafted a template that patients can customize and go into their patient portal because we think every member of a patient's care team should have a base knowledge of their mast cell disease.

So we've created a template that helps the patient go into the portal, copy and paste it in there, customize it for your information that says, please would you consider attending this?

You're part of my care team. I want you to know about this disease that I either have or may have or we've been talking about or whatever the circumstances, that they can customize it and invite their physician,

their ob, if you might have a mast cell disease and then you find that you're pregnant. Let's get your OB into the echo program.

So let's make sure that the whole care team gets access to this information. So I'll make sure you have that blog post because that's very important.

Caroline: That is absolutely amazing. That would be wonderful. Thank you.

So now we've talked about, you know, the parent and caregiver perspective, the healthcare perspective, but what about family and friends and coworkers? So how can the rest of us become supportive of people who are living with different mast cell diseases?

You know, in our food allergy world, it's somewhat cut and dry. Like we know the questions to ask. Pretty much we know how to avoid this, but what do we do?

How can we be good supporters and allies?

Jessica: I think that's such an important and kind question that you've asked.

And I think mast cell disease patients can sometimes miss out on important moments because their reactions can be so life altering or debilitating or sometimes the avoidance of situations that could lead to reactions can be very isolating.

So I think one of the things that friends and family can do, other than just of course, listen, is to try to create safe spaces and safe environments for their friends and family who have a mast cell disease.

So ask someone in your life, you know,

what are those triggers? What sometimes they may not know, but if they do know,

you know, is there a particular scent? How can I create a scent free environment for you? I mean, sometimes it also is food similar to food allergies. Sometimes people have food related triggers.

So I think just the questions are similar it might be a little bit different in terms of, like, what makes a safe environment, but just asking, like, how can you safely participate?

How can we include you so that you're not missing out on this family event?

And then I think patients also need a group of friends and family that can be on their team when they need something.

And one example of that is having someone who will go to appointments with them. That can be really, really beneficial to mast cell disease patients because one of the symptoms that patients can suffer from is brain fog.

And so having just an additional pair of ears and note taker there can be really beneficial. And then sometimes we have a really awesome expert healthcare provider in our field who calls friends and family the Truth Squad.

So I'm kind of stealing this from her. But, you know, our patients, sometimes they have so many symptoms they've just grown used to it. And so they might go to their physician and say, oh, I'm fine, it's normal, I'm okay.

And their truth squad can say,

wait a second,

you reacted like four times last week.

Let's talk about this in a little bit more depth. So having those friends and family that can kind of be part of your care team too, is really important.

Caroline: The Truth Squad, I think we should all have teachers with that on there. But that is brilliant though, because you're right. I'll go to the doctor and forget completely to bring something up.

Even if I have notes in front of me, I might forget it. Or you're receiving information and it might get overwhelming. And not taking it all in to. So to have that second person there is really powerful.

Jessica: Absolutely. I think that's really important.

And it just, it can be. You know, if you have been itching for six weeks and now you're itching a little less, you might say, your doctor, I'm actually a lot better.

But if you haven't seen them in a while, you're not telling them about the six weeks prior when you were itching, itching, itching. So it's good to have someone who can kind of remind you or kind of go over.

Even if they can't make the appointment, maybe they could go over those things with you beforehand. Like, okay, here are some things I've observed that you've been going through. Let's not forget to talk to your doctor about these things.

Caroline: That is brilliant.

So this went so fast, but we are at the end of our time together. I don't even know how we got here this fast. So. But before we say goodbye, is there anything else you want to share with listeners?

Jessica: Of course.

First of all, if you are struggling with a mast cell disease or suspect you might be, please know that you are not alone. TMS is here for you. We have a large of people that are on a similar journey to yours and they're willing to support one another and also I want them to know there's a lot of reason for hope right now.

Researchers are discovering new things about these diseases and even about the actual mast cell itself every day.

There have been some exciting treatment advancements in the past few years and we're confident that there will continue to be advancements that improve the lives of patients. So just hang in there,

be hopeful, and we're here for you.

Caroline: Those are very uplifting words to end by. Thank you so much Jessica for your knowledge and your passion and the good that you and your organization do. And then thank you for the time today.

Jessica: Absolutely. I'm happy anytime. Thank you so much for having me, Caroline.

Caroline: Well, I look forward to our next podcast. Thank you.

Before we say goodbye today, I just want to take one more time to say thank you to Blueprint Medicines for their kind sponsorship of FAACT's Roundtable Podcast.

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