In this episode, we sit down with Sue Stewart, a 36-year survivor of acute myeloid leukemia (AML) and the founder of BMT InfoNet. Sue walks us through her transplant journey, beginning with a difficult diagnosis in the late 1980s and the grueling induction chemotherapy that followed. With limited treatment options, she opted for an autologous bone marrow transplant—a relatively new and uncertain procedure at the time. Despite the intense side effects, including confusion and delusions, Sue recovered and slowly rebuilt her life. Her story is one of strength and long-term resilience, shaped by medical challenges and a determination to help others facing similar paths.
After surviving her transplant, Sue felt driven to understand her experience and quickly saw the gap in patient-centered information. A high-profile court case involving bone marrow donation misinformation pushed her to act. In response, she started a small newsletter to provide reliable, understandable transplant information. What began with 700 names (pre-Internet) grew rapidly and became BMT InfoNet, an organization that now supports over 20,000 people weekly with resources, educational content, and peer support.
We explore how GVHD care has transformed over the decades. Sue outlines progress in diagnostics, treatment options, and the move away from long-term steroid reliance. Her organization has helped shift the focus beyond survival to long-term quality of life, leading to the creation of survivorship clinics and a deeper understanding of transplant-related complications.
Sue introduces us to BMT InfoNet’s key programs, including Caring Connections, which matches patients and caregivers with peers based on similar experiences. We also learn about their online, professionally moderated support groups, offered to different patient communities. These groups have been instrumental in helping individuals process their experiences and stay connected.
The organization’s educational materials and annual survivorship symposium continue to empower patients to become active members of their care teams. Sue emphasizes the importance of recognizing symptoms early, understanding treatment options, and advocating for proper care—especially for GVHD, which many local doctors may not fully understand.
Finally, Sue shares the story of how one patient’s experience with ocular GVHD and scleral lenses led to a wider medical breakthrough. It's a powerful reminder of how patients can change the landscape of care by sharing their stories. BMT InfoNet's mission remains clear: provide support, share knowledge, and give voice to those on the transplant journey.
BMT InfoNet: https://www.bmtinfonet.org
Contact Email: help@bmtinfonet.org
Thanks to our Season 19 sponsors, Incyte and Sanofi.
00:40 - Introduction to Sue Stewart
01:15 - Sue’s AML Diagnosis and Transplant Story
06:33 - Founding BMT InfoNet
10:05 - Life Before the Internet: Lack of Resources
12:43 - Progress in GVHD Treatment
15:25 - Peer Support Through Caring Connections
17:16 - Online Moderated Support Groups
18:58 - Educational Resources on GVHD
21:57 - GVHD Specialist Directory
24:05 - Annual Survivorship Symposium
26:17 - Financial Assistance for Patients
27:39 - GVHD Wall of Hope and National GVHD Day
30:01 - Final Story: How Patient Experience Changed GVHD Care
Peggy Burkhard (00:40):
Well, hello everyone. So, today, we have with us Sue Stewart, who is the founder and executive director of BMT InfoNet. Sue is a survivor of 36 years, and she will share her personal story with us today as well as what she has learned along the way, and how her wonderful organization helps not only survivors, but caregivers thrive post-transplant.
Welcome, Sue.
Sue Stewart (01:05):
Thank you, Peggy. It's great to be here.
Peggy Burkhard (01:07):
So, Sue, let's just dig right in. I'd like you to share with listeners your story. Tell us about your transplant and how you're doing today.
Sue Stewart (01:15):
I had my transplant in January of 1989 when I was 37-years-old after I was diagnosed with acute myeloid leukemia, or AML. I had previously undergone several rounds of induction chemotherapy to get me into remission, and that chemotherapy was very difficult.
In fact, at one point, I actually went into shock after the chemotherapy, and fortunately, they were able to rescue me from that. So, when I was done with that induction chemotherapy, my docs proposed two choices for the next round of therapy. I could even have more chemotherapy, which I didn't want to do, or I could have a bone marrow transplant, which was a relatively new procedure at the time.
I'd never heard of a bone marrow transplant before, but I chose it because I thought it would be better than more chemotherapy. Little did I know that not only would it involve more chemo, but higher dosages.
My first meeting with my transplant doctor was similar to what I think many transplant patients experience. There was a lot of scary information about potential side effects, and worst of all, no guarantee that the transplant would cure me. My doctors gave me less than a 50% chance of a cure, and no matter how hard I tried, they wouldn't inch it up over 50%.
Peggy Burkhard (02:51):
(Laughs) Oh, wow.
Sue Stewart (02:51):
So, after about 15 minutes, I was totally overwhelmed with the information, and I really couldn't absorb all that the doctor was saying. So, the best treatment option for me then would've been a transplant using donor cells, also called an allogeneic transplant. However, I was an only child, and I had no siblings who could be my donor.
And the National Marrow Donor Program, which is now called NMDP, which recruits unrelated donors for patients, was just getting started. And my doctors figured it would take many months (if at all) to find a donor through the NMDP.
So, instead, they recommended that I do a transplant using my own bone marrow, called an autologous transplant. The plan was to collect my bone marrow, treat it with some chemicals that they hoped would kill any leukemia cells in the bone marrow, and then reinfuse it into me.
So, I spent about 13 weeks in the hospital, which was a record at that time for patients undergoing an autologous transplant. And I had the usual side effects from chemo that most patients have. Mouth sores, nausea, diarrhea, fatigue. But I think the scariest side effect for me was the confusion and the delusions.
At one point, I was convinced the mayor of Chicago was having nightly fireside chats with me in front of the fireplace in my hospital room, which obviously didn't exist, but it was very real to me. And once I realized in a brief moment of sanity that that couldn't be possible …
[Laughter]
I was actually really scared that I had some kind of brain damage, so that was very, very scary. But I recovered. I was finally discharged. And after that, my road to recovery was pretty uneventful. I was able to get back to work part-time in about three months. And by the end of the year, I was cross-country skiing in New Mexico.
I did continue to have some cognitive challenges, and like many transplant survivors, I was very uncertain and scared about the future, whether I would relapse or not. So, I tended not to make long-term plans, just lived a day at a time, enjoyed it and hoped for the best long-term.
Although, I didn't have graft-versus-host disease myself, I did have some similar side effects that were occasionally, but not usually, seen in auto-transplant patients. My hair actually never grew back, even though my oncologist had promised me that that was the one thing he could guarantee would happen, my hair would grow back.
And I had difficulty managing heat because my sweat glands didn't function properly. I couldn't sweat. So, I had to be very careful to remain out of situations where there was no relief from the heat. And then I also developed some breathing difficulties, which persist to this day. But otherwise, I'm in pretty good shape.
Peggy Burkhard (06:21):
I'll say you are. Wow, I didn't realize all of that. Well, Sue, thank you so much for sharing your story with us. So, why exactly did you decide to create BMT InfoNet?
Sue Stewart (06:33):
Well, a few months after my transplant, I started processing the experience and trying to understand what happened to me. Why I developed leukemia in the first place, and why all those things that happened to me in terms of induction chemotherapy and the transplant actually occurred. And whether or not it was reasonable to expect that I was actually going to be cured.
And at the same time, there was a highly publicized battle taking place in Chicago between a man who had divorced his wife (with whom he had had a child), remarried, and then had another child with a new wife. The new child had leukemia, and the father wanted the child he had with his first wife to be tested to see if the child could be a bone marrow donor for the new child.
The mother had talked to her physician, her pediatrician, and was very concerned that if she allowed her child to be a bone marrow donor, there would be some potential risks that could harm his health. So, they went to court. There was this very sensational public trial, people were talking about it all over the city.
And unfortunately, the news reports from it focused on those small but real risks of donating bone marrow as opposed to the overall success rate of being a bone marrow donor without having any complications.
And I would sit down at a restaurant, and I would hear people on the other side talking about this thing and talking about how they would never be a bone marrow donor because my gosh, it was so risky, it would definitely impact your health.
So, I decided to start a newsletter that provided factual information about both what was involved in going through a transplant, and also what was involved in being a donor. And you need to keep in mind that at this point in time, there was no internet, so people couldn't jump on the internet and quickly Google and figure out what was fact and what was fiction.
And there was really no print information available, even to patients, in easy-to-understand language about what was involved in being a donor or going through the transplant. So, the newsletter, I initially sent out to about 700 people who I gathered from lists provided by some other disease-based organizations that had people who were having a transplant.
And it was a hit immediately, and it quickly grew to several thousand people in a few months. And then eventually, when the internet became available, we created a website to contain that information, and we were able to begin using email and social media to disseminate the information to many more people.
Peggy Burkhard (09:13):
That is incredible to think about. And had that news story not happened at that time, do you think you would've done this?
Sue Stewart (09:21):
Well, I think eventually, I would have. It spurred me to do it sooner than I probably would have, but there was absolutely no information in print form whatsoever. There was no ability to talk with other transplant survivors or caregivers of transplant survivors at that time. And so, I think eventually, I would've created the newsletter just because there was such a need for it.
Peggy Burkhard (09:47):
Yes. Oh, that's amazing. I'm so glad that you did that (laughs). So, you touched a little bit on the internet, and I know for The Link we get this, we feel it. The early days pre-internet, oh my goodness, so different from today. Let's talk about that.
Sue Stewart (10:05):
Absolutely. So, pre-internet, the only information you really could get was from your doctors, which of course, is an excellent source of information. The problem is what the doctors described was really limited to steps involved in the care and potential side effects.
There really was no opportunity to hear from patients or caregivers who had been through the process to kind of get the patient's eye view of what it was like to go through the process. How you planned for the process, how you decided to communicate with your children about the transplant, things like that.
And unfortunately, many doctors are excellent clinicians, but they aren't necessarily the best communicators.
[Laughter]
And so, the information people were getting was technically accurate, but they had a lot of trouble understanding it. And people are reluctant to keep asking the same question over and over again. And so, they went into transplant and through survival, really with not a good understanding of what was happening.
And so, I really saw a need to become the translator of this technical information into lay language so that people could understand what to expect, the complications, and how to manage them, and then what they could expect into survivorship.
Peggy Burkhard (11:29):
And we both know all too well (we haven't touched on it yet), even the isolation and the need for support from family and friends and the mental, just the toll it takes on you mentally. And we'll get into all of that.
But this is just incredible when you think of how things have changed from when you started BMT InfoNet to now, and just the support that is out there and how we're able to help people in a different way but a very important way.
Sue Stewart (11:57):
Back then, we were able to communicate with a few hundred up to a couple thousand; and now, thanks to the internet, we communicate with more than 20,000 people weekly by email and through social media.
And we have a very comprehensive website where people can quickly jump on, find reliable information in lay language about bone marrow and stem cell transplants, as well as videos and things like that, that really will enhance their understanding of what to expect.
Peggy Burkhard (12:26):
And they can view them and listen to them on their own time when it works for them. I always say we meet them where they are, whether it's 2:00 in the morning or 7:00 in the morning. So, Sue, how has the GVHD landscape changed since the inception of BMT InfoNet in the 90s?
Sue Stewart (12:43):
Well, particularly in the past few years, it really has changed dramatically, and I'm thrilled that that's happened. For many, many years, there was really very little or no progress in figuring out how to prevent GVHD, let alone how to treat it.
In the old days, there weren't even common ways to diagnose GVHD among doctors. One person may diagnose it as not severe, others would diagnose it as severe, and there weren't any common guidelines for how to treat it.
So, recently, there have been a number of drugs that have been developed that actually can treat GVHD better than the use of just steroids, which, as we know, steroids are a very difficult medication to take on a long-term basis and has lots of side effects, both physical and emotional.
And then in addition, there's been a new treatment that's been developed where they use cyclophosphamide after transplant to reduce the incidence of GVHD, which has been very successful in the studies.
And it's expected that's going to really greatly reduce both the number of patients who have GVHD in the future, as well as those who have serious cases of GVHD. And I think something that we actually had a lot of influence on at BMT InfoNet was a focus on survivorship.
For a long time, in the early days of transplant, back in my days, you were lucky if you got through the transplant, and the physicians and the nurses, et cetera, really didn't focus on what would lie ahead, how you would deal with life after transplant, be it physical or emotional challenges.
But when we started the survivorship symposium, people began to recognize that this was really an issue. We had people that were actually surviving this process, but they had issues that affected them shortly after transplant, as well as some that didn't pop up until many years after transplant.
And so, we now have GVHD clinics, we now have survivorship clinics who help patients deal with these issues many months or years after transplant. And I think that's been a real vital emphasis that has now been developed and is very helpful for patients.
Peggy Burkhard (15:02):
Well, and I think for folks to see people like yourself decades, decades later still thriving and living your best life, it's the hope that back then, there were not those statistics to show the survivorship. We joke that the need for more survivorship-related programs is a good thing because it means there’s survivors, right?
Sue Stewart (15:22):
Absolutely, absolutely.
Peggy Burkhard (15:23):
(Laughs) So, that's important. Let's talk about your Caring Connections Peer Support Program.
Sue Stewart (15:31):
So, the Caring Connections Program is a peer support program that connects patients as well as their care partners with others who have been through transplant.
We're able to connect people who had the same diagnosis, the same type of transplant, are of a similar age, same gender (if that's an issue to the person who wants to talk to someone else), and had similar life experience; either married, not married, living alone, having children at home wanting to know how to explain the process to them.
And it really enables people to get either the patient's or caregiver's perspective on what to expect, how to plan for it, and how to manage many challenges. For example, how do you manage other family members’ needs while the patient is going through transplant, oftentimes far from home?
How did you manage side effects? How do you explain the transplant to your children, to your friends, and how do you manage the isolation afterwards when people think you've been through a transplant? And it's like being through surgery; you go in, you have the surgery, and you're done, and then you go live your life. Well, transplant's not like that.
Transplant is a long-term recovery process with a lot of complications that are sometimes hidden. So, talking to somebody else who actually gets it is a real bonus for many, many patients. And several hundred people now take advantage of this program each year.
Peggy Burkhard (17:00):
Oh, that's great. We have a similar program. And I echo everything you're saying about the peer support. It makes such a difference for so many. So, Sue, you offer online-moderated support groups for patients, parents, spouses, partners, and young adults. Tell us more about this if you could.
Sue Stewart (17:16):
Yeah, this was something that we developed two years ago, and it has been wildly popular. We have support groups, as you said, for GVHD patients, care partners, parents of pediatric patients. And we also have one for young adults, people 18 through 39. And most of the groups meet weekly for six-to-eight-week sessions.
And it's a great opportunity for them to talk to people who really understand. They're walking the walk, they're talking the talk. You don't have to explain yourself in terms of your situation to the people. They all get it.
And it's a wonderful opportunity for people to share information in a private space and to get support from people who understand what you're going through, both physically and emotionally. And there have been many great friendships forged for several months, several years, among those who participate in the groups.
And many go on after the initial support group session to meet on their own via Zoom or just by phone call, periodically. It's been extremely popular, very rewarding.
And I think importantly, it is led by a professional, either a social worker or psychologist, who can help people process information and give them ideas about how to manage things emotionally in a different manner than they might otherwise have thought.
Peggy Burkhard (18:42):
So, Sue, you offer free information online and in booklet form. Information that explains how GVHD affects various organs and tissues, symptoms to watch for and to report to the doctor, and other treatment options. Why is this so important?
Sue Stewart (18:58):
Well, I think because it's information that's hard to find. And not only hard to find, but hard to find in language that a patient or caregiver can understand. So, what we do is we work with a team of experts to develop the language in our GVHD booklet, so we know that the information is medically accurate and not biased in any way, shape, or form.
And then I work on making sure that the information is not only accurate, but is easily understood by people who are going to be going through transplant and who may develop GVHD. And together, we produce a booklet, and we update it annually because there thankfully are now so many changes coming in the GVHD space so that people can understand and have accurate, timely information about what to expect and how to manage GVHD.
And I think the key thing that I find from the booklet is the sections where we tell people what symptoms to watch for and what you should do when you see those symptoms. Because oftentimes, patients don't realize that they're really an important part of the care team in terms of managing their GVHD.
If they don't report a symptom or they don't look for a symptom and report it to their doctor, the doctor can't take care of it. So, it's really important to me and to our team that people understand that they really need to weekly examine themselves for symptoms of GVHD. And the booklet, as well as some videos we have, tell them exactly how to do that.
Peggy Burkhard (20:35):
Yes. And talk about empowering people, giving them the knowledge base to feel like they can have a conversation with their doctor and their care team, and they really understand what's going on.
Sue Stewart (20:47):
Absolutely. So, I think it's really important that both patients and caregivers understand that they're a vital member of the care team. They're not just the patient and the caregiver; they're part of the care team.
And by giving them information about what to look for in terms of symptoms of GVHD and making sure they understand that it's vital that they report those symptoms to the doctor early, will enable the doctor to treat that quickly and efficiently as opposed to waiting longer when the symptom may actually get worse.
So, I think that patients oftentimes feel like the doctor is king and they're just the patient, but really, the patient is a vital member of the care team and should feel no qualms about asking questions, reporting symptoms, and trying to get relief from issues that are really bothering them.
Peggy Burkhard (21:49):
So, Sue, I have another question. You have a directory of GVHD specialists, subspecialists, and clinics that patients who no longer have access to their transplant team can use to find specialists to help them with their GVHD?
Sue Stewart (21:57):
Yeah, that's a unique directory that only is found on our website, but it's a really important directory because oftentimes, patients either don't live near their transplant center or their care at the transplant center ends after a period of time, and yet they still have graft-versus-host disease that they need to deal with.
And unfortunately, most oncologists and primary care physicians are not well versed in graft-versus-host disease, they have never even heard of it. And so, the care that the patients can expect from their local oncologists or primary care physicians is not the same as the type of care that they would get if they were actually seen by a GVHD specialist.
So, the directory lists more than 2000 specialists throughout the United States who are available to treat patients with various forms of graft-versus-host disease. Be it ocular GVHD, skin GVHD, GI GVHD, pulmonary GVHD, even genital GVHD.
And people can search the directory, find someone in the area who they can reach out to, as opposed to relying on a local doctor who really doesn't have a lot of time or background in treating GVHD, like primary care physicians and some oncologists.
And I recall one woman who contacted us shortly after we put the directory online, who was so thrilled because she had been searching for months and months for somebody in her area to help her with ocular GVHD, dry eyes, and vision difficulties.
And with one phone call after looking at our directory, she was able to contact the doctor, who was able to get her in and help her deal with her ocular GVHD in a much more effective manner than she had been receiving treatment for.
Peggy Burkhard (24:11):
Oh, that's great. So, Sue, we touched on the survivorship symposium. How many years have you been hosting this? And I know that GVHD is now a big, important part of that symposium. And when is the next one? Lots of questions about it (laughs).
Sue Stewart (24:25):
Lots of questions, lots of good questions. So, we've been hosting the survivorship symposium since 2007. Initially it was a symposium that we would hold in a specific geographic location in the United States, and we would switch the locations around each year.
And it was a weekend symposium with morning, noon, and night workshops on various aspects of survivorship, including GVHD, and was typically attended by somewhere between 300 and 500 people in that geographic area.
Since COVID, that has changed, as has everything in life, but actually for the better. Now, we offer the symposium online, it's a week-long symposium. So, we have workshops starting on a Saturday, going through Friday, on various aspects of survivorship. It's free, and we now get more than 2000 people that register for the live event each year.
We know that not everybody can attend all of the workshops through the week. And so, we record those workshops, and then later make them available for viewing on our website along with a transcript so that people like me who don't have the patience to sit through a video can read the transcript.
Peggy Burkhard (25:42):
I'm the same way.
Sue Stewart (25:44):
So, we've got workshops on late effects, managing various forms of GVHD. There are usually seven or eight GVHD-specific workshops. And then workshops on other problems like cognitive problems people have after transplant, managing infections, difficulties with intimacy and sexual relationships, and a whole lot more.
And in 2026, it's going to take place, May 2nd to the 8th, and we will shortly be sending out information about how to register. But if any of your listeners are interested in learning more, they can just email us at help@bmtinfonet.org, and we'll get back to them and make sure they have information.
Peggy Burkhard (26:28):
Terrific. So, Sue, let's jump in about financial assistance to patients. I think this is so neat. Tell us what this is and how you're able to do this.
Sue Stewart (26:37):
Yeah, we set aside a certain amount of dollars each quarter to provide financial assistance to various groups of patients. And one of those groups are people that are living with GVHD. The dollars don't pay for treatment per se, but they do pay for things like travel, housing, groceries, rent, things like the expenditures people have while they're dealing with GVHD or while they're going through transplant.
So, people apply through the social worker at their transplant center or at the hospital or medical center that they're currently at. We have a very simple screening process. We rely on the social workers to assure us that this person does indeed have GVHD and is indeed in need of financial support.
And then we will send them a check for whatever amount is appropriate once we've screened them and approved them to receive the money. So, it's a pretty quick and easy way to get some money. It's not a ton of cash, but it does help pay the expenses that just mount when you're dealing with something like GVHD.
Peggy Burkhard (27:46):
That's fantastic. So, we're going to jump into the GVHD Wall of Hope on your website. I just love this so much. Let's talk about what it means to survivors of this rare disease.
Sue Stewart (27:59):
So, the GVHD Wall of Hope was something we started on the first annual National GVHD Day. And we know that one of the things about GVHD is that it's very isolating. People around you who haven't been through transplant, who don't have GVHD often have a really difficult time understanding GVHD and providing empathy and understanding and support for GVHD patients.
So, the Wall of Hope was an opportunity for people to post a photo if they want and a short story about how they're managing GVHD, how it's affected their lives, and kind of became a virtual sharing place where people could get to know remotely other people who were dealing with the same issues and draw strength and encouragement from their stories.
Peggy Burkhard (28:53):
One of my favorite parts of this is just the joy in their faces, that they're feeling validated. They're feeling seen.
The GVHD day, that we're both a part of the same Alliance and we work so hard to promote this, and it'll be our third year coming up in 2026 that we'll have. February 17th is the day. And I think it's just fantastic how we can see the difference that it's making, having that day of recognition.
Sue Stewart (29:22):
It does. And oddly enough, when we first did it the first year, I had a number of GVHD patients who said, “Why are you celebrating GVHD? It's a horrible thing. It's not something to celebrate.”
And I explained, “We're not celebrating, we're honoring patients and care partners who have been dealing with GVHD, shedding some light on the topic, letting the public know that this is a real serious issue. And just basically providing one day to show our support for people who still struggle with GVHD.”
Peggy Burkhard (29:57):
I could not agree more. And I received some of the same sort of comments, and it really made me think for a second. But I agree with you. What we are doing is making a difference in validating how they feel about GVHD.
So, Sue, we've covered a lot today. Is there anything else that you want to say, or maybe a story, a survivor who has touched your heart? I know you spoke of a few because of your support.
Sue Stewart (30:21):
There are a lot of people who have reached out to us and thanked us for the various programs and services that we provide. And it's always wonderful to get those notes and those phone calls that let us know that we really are making a difference. Because that's what we're all about. We're all about making a difference in people's lives.
I think the one final note that I would end on is people have information to share that oftentimes, the doctors don't have that really makes an impact on people's lives, other people's lives, their journey with GVHD.
And one anecdote I'll just share is many years ago I got a call from this woman on the East Coast. I think she was in Boston, and her son lived in Texas, and he had GVHD that was very severely affecting his eyes. He had real dry eyes, a very difficult scene, and he was a lineman that worked outdoors and in the sunlight in Texas, it was just excruciating.
And she had actually heard a story about an outfit in Boston that was just forming called The Boston Foundation for Sight. They had a therapy, had a new type of contact lens that people were using who had dry eye caused by a different condition other than GVHD.
So, she reached out to them, brought her son up, had them examine him and treat him with this, what they call scleral lens, that is actually a contact lens that has a bath of solution inside the lens that bathes the eye continuously so it's not so dry. And it made a huge difference in his life.
And so, she called me, and she told me about it. I had never heard about it. And I knew that the doctors had never heard about it because the folks at the Boston Foundation site had never heard about GVHD and had never communicated with the GVHD doctors.
So, through that notice from her to me, sharing that experience, I was able to communicate with doctors at transplant centers throughout the US about this potential therapy for graft-versus-host disease, which now has become a standard part of therapy for ocular GVHD when it becomes very, very severe.
So, I think we all have an opportunity to share not just emotional support, but information with each other that can really make a difference in someone's life.
Peggy Burkhard (32:44):
Well, thank you, Sue. This has been so wonderful. I love working side by side with you, as you know, through the Alliance and just being able to share your resources, I think it is so important. And I thank you for your time today.
Sue Stewart (32:59):
Well, thank you. I enjoy working with you in The Link as well and look forward to a continuing ongoing relationship.