
Real patients. Real change.
Discover stories of real people who decided to take charge of their indolent systemic mastocytosis (ISM) treatment journey with the help of their doctors.


Gloria, AYVAKIT Patient and her husband

Gloria, AYVAKIT Patient and her husband
Real patients. Real change.
Discover stories of real people who decided to take charge of their indolent systemic mastocytosis (ISM) treatment journey with the help of their doctors.
Meet Andrew
“We talk about playing whack-a-mole with these different ISM symptoms.”
In 2017, Andrew was diagnosed with ISM and relied on multiple treatments to manage his symptoms—until he and his doctor decided to take a different approach. Watch how Andrew treats his ISM at the source with AYVAKIT.
Andrew has been compensated by Blueprint Medicines for sharing his story.
Text on Screen:
[AYVAKIT logo]
AYVAKIT® (avapritinib) is a prescription medicine used to treat adults with indolent systemic mastocytosis (ISM). AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
AYVAKIT may cause serious side effects, including: cognitive effects, skin sensitivity to sunlight (photosensitivity), and harm to your unborn baby.
Please see additional important safety information near the end of this video. Please see the link above for the full Prescribing Information, including Patient Information for AYVAKIT.
Andrew:
Try him. He can talk.
Andrew:
My name is Andrew. I was born and raised in Salem, Oregon. I’ve…
Text on Screen:
Andrew was compensated by Blueprint Medicines.
Andrew:
…lived here all my life. I’m married to Shannon. We’ve been married for almost 24 years now. We have three kids. As a family, we enjoy white water rafting, camping. We do some rock climbing. Although as I'm getting older, there’s less of a desire to be hanging from a cliff somewhere. But we are definitely a nature-oriented family.
Andrew:
I was diagnosed with indolent systemic mastocytosis in 2017.
Text on Screen:
Andrew, Salem, OR
Diagnosed with indolent systemic mastocytosis (ISM) in 2017
Andrew does not provide medical advice.
Andrew:
I think, like probably a lot of people with ISM, I didn’t quite realize that I had this disease. In fact, I had no idea. I just knew that my eyes were watery and itchy. I started to notice uncomfortable, sort of itchiness in my skin joint pain, spots on my body, GI issues, and fatigue setting in, uh, more than it had in the past. So I was at a routine skin check with my dermatologist. He did a biopsy… on one of the marks on my skin which, uh, he was suspicious about. And he explained that, uh, the biopsy had come back positive for this thing called mastocytosis. I had never heard of it before. So we found a specialist in Boston who was an immunologist. Before I flew out, the doctor asked that I have a test for a KIT mutation, which came back positive. I also had a bone marrow biopsy. We booked a flight to Boston and she was able to diagnose me with indolent systemic mastocytosis, and uh, explained to us all these different symptoms almost assuredly related back to this single diagnosis that we didn’t know about before. It was scary. The doctor’s advice was that we treat all these different symptoms individually with eye drops, antihistamines, and antacids. She recommended that I connect with a local hematology oncologist, uh, here in Oregon. The diagnosis didn’t stop me. I wouldn't even say it necessarily slowed me down, but it did require me to be really thoughtful about where I was going what I had with me, when I would be back, and things like that. It was a complicating factor, for sure. My family and I were on a five-day rafting trip. No reception. No roads in or out. And on the second night there I had a very strong reaction. I remember getting up and taking a few steps and uh, then collapsing. It was hard to breathe. Uh, my breath was very shallow. Fortunately, my friend who was there with me, um, had some epinephrine. That seemed to bring me back and I sort of recovered. We talk about treating these different symptoms and playing whack-a-mole with these different symptoms. But when you have a reaction, like that it’s more than, you know, “How can I treat this and finish this day at work?” I became much more interested in pursuing different treatment options for ISM. I first heard about AYVAKIT during the trials. For me, I had to seek it out. And then when I sat in my hematologist’s exam room, I said…
Andrew:
…Hey! There’s this drug that I read about it called AYVAKIT. Seems to be the only the drug that treats, you know, the disease that I have, ISM.
Text on Screen:
AYVAKIT is the only FDA-approved drug for adults with ISM. AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
Andrew:
I can remember to this day, literally he spun around in his chair and flipped on the computer, and started learning about AYVAKIT as I sat there on the exam table. He took some time to research it himself. We decided it would be worth it for me to give it a shot. I started taking AYVAKIT in November of 2023. I wanted something that targeted the source of my ISM, in addition to supportive care. My doctor and I had a plan to watch out for any potential side effects.
Andrew:
Since starting AYVAKIT, I’ve noticed changes in my ISM symptoms. The GI issues are feeling better. I think we’ve noticed a visible reduction in some of the marks that come from the ISM.
Text on Screen: ISM signs and symptoms evaluated in the clinical trial were: abdominal pain, nausea, diarrhea, spots, itching, flushing, bone pain, fatigue, dizziness, headache, brain fog.
Andrew:
The solution’s going to be different for everyone, but this has been a great option for me. I would love to encourage other patients to sort of chart their own course, and lean into finding a solution. If you’re considering AYVAKIT, I would suggest talking to your doctor and educating yourself about ISM and your treatment options. The solutions are there, you just have to find them.
Text on Screen:
Target the source of ISM
[AYVAKIT logo]
Text on Screen:
WHAT IS AYVAKIT® (avapritinib)?
AYVAKIT® (avapritinib) is a prescription medicine used to treat adults with indolent systemic mastocytosis (ISM). AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
IMPORTANT SAFETY INFORMATION
AYVAKIT® (avapritinib) may cause serious side effects, including:
Cognitive effects. Cognitive side effects can happen during treatment with AYVAKIT and can be severe. Tell your healthcare provider if you develop any new or worsening cognitive symptoms including forgetfulness, confusion, getting lost, trouble thinking, drowsiness, trouble staying awake (somnolence), word finding problems, seeing objects or hearing things that are not there (hallucinations), or a change in mood or behavior.
Skin sensitivity to sunlight (photosensitivity). Your skin may be sensitive to the sun or other forms of light (photosensitivity) during treatment with AYVAKIT. Avoid or limit exposure to direct sunlight, sunlamps, and other sources of ultraviolet radiation during treatment and for 1 week after stopping treatment with AYVAKIT. Use sunscreen or wear clothes that cover your skin if you need to be out in the sun.
Before taking AYVAKIT, tell your healthcare provider about all of your medical conditions, including if you:
- History of bulging or weakening of a blood vessel wall (aneurysm) or bleeding in your brain
- Have a history of stroke within the last year
- Have low platelet counts
- Have or have had liver problems
- Are pregnant or plan to become pregnant. AYVAKIT can cause harm to your unborn baby
- Females who are able to become pregnant: Your healthcare provider should do a pregnancy test before you start AYVAKIT. You should use effective birth control (contraception) during treatment with AYVAKIT and for 6 weeks after the final dose of AYVAKIT. Talk to your healthcare provider about birth control methods that may be right for you. Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with AYVAKIT.
- Males with female partners who are able to become pregnant should use effective birth control (contraception) during treatment and for 6 weeks after the final dose of AYVAKIT.
- are breastfeeding or plan to breastfeed. It is not known if AYVAKIT passes into your breast milk. Do not breastfeed during treatment with AYVAKIT and for at least 2 weeks after the final dose of AYVAKIT. Talk to your healthcare provider about the best way to feed your baby during this time
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. AYVAKIT may affect the way other medicines work, and certain other medicines may affect how AYVAKIT works. Especially tell your healthcare provider if you take estrogen-containing hormonal birth control or medicines that prevent blood clots.
Do not drive or operate hazardous machinery if you have confusion or trouble thinking during treatment with AYVAKIT.
The most common side effects of AYVAKIT in people with ISM include: swelling around your eyes, dizziness, swelling of your arms and legs, and flushing.
Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with AYVAKIT if you develop certain side effects. AYVAKIT may cause fertility problems in females and males. Talk to your healthcare provider if this is a concern for you.
These are not all of the possible side effects of AYVAKIT. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088 .
Please see the link above for full Prescribing Information, including Patient Information for AYVAKIT.
© 2025 Blueprint Medicines Corporation.
11/2024 USOTH24.0021.2
Text on Screen:
[AYVAKIT logo]
Patient voice and images of patient, caregiver, and family used with consent.
Text on Screen:
[AYVAKIT logo]
AYVAKIT® (avapritinib) is a prescription medicine used to treat adults with indolent systemic mastocytosis (ISM). AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children. AYVAKIT may cause serious side effects, including: cognitive effects, skin sensitivity to sunlight, and harm to your unborn baby.
Please see additional important safety information near the end of this video. Please see the link above for the full Prescribing Information, including Patient Information for AYVAKIT.
Gloria:
Tell me when you’re ready…okay.
Gloria:
My name is Gloria, I'm from Springfield Missouri. My husband and I have lived here for 28 years. I'm adventurous. I love to snow ski. Photography is my main passion. Michael and I love to travel. We've been to all of the United States except five.
Text on Screen:
Gloria, Springfield, MO
Diagnosed with indolent systemic mastocytosis (ISM) in 2002
Gloria does not provide medical advice.
Gloria:
I was diagnosed with indolent systemic mastocytosis in 2002. Looking back, my first symptom was fatigue. Extreme fatigue. I didn’t want to do anything. I didn’t want to go anywhere, I just wanted to rest. I was confused because I didn’t know what type of doctor to go to. I knew something was physically wrong, but I didn’t know what.
Text on Screen:
These are example patient images and may not represent all patients.
Gloria:
And then I noticed spots on my thighs. And I went to the dermatologist. He biopsied one of my reddish brown spots. And when it came back positive for systemic mastocytosis, he said I'm sending you to an oncologist. I saw her and she said I'm sending you to an allergist. I would get red. The flushing would be sometimes over my entire body, but mostly my face and my chest area. Itchy and painful. Hot. Extremely hot. All the time. I remember thinking okay now I know what it is. I’ll figure out how to deal with it. There are many triggers with this disease or it can just happen. Most of mine just happen. Unless I'm out in the sun too long. And then that’s a definite trigger for me. That interrupts our travel life. We find the closest hospital. We make sure we stay nearby. It just affects your life daily…birthday parties, dinner with friends…or even just Michael and I, I’m like I gotta go home, I’m getting ready to have a reaction. I thought “I've got to help other people with this.” I realized there was no cure for it. My doctor prescribed many medications to keep my symptoms under control.
Text on Screen:
There are many advocacy organizations available for people with indolent systemic mastocytosis or other mast cell disorders.
Gloria:
But I also went to the mastocytosis society conferences that’s where I got my bulk of research. Also met another person that had to stick their head in the freezer to cool off, so that was comforting to know that, hey, I’m not crazy. But the one thing that really helps me is to work on my photography. If I'm not feeling well if I just focus on something creative, I feel much better.
Text on Screen:
Michael
Gloria’s husband
Michael:
I’m actually her administrative assistant to the camera.
Gloria:
Actually, I said you’re the camera boy.
Michael:
Oh actually that’s true. I haven’t been promoted yet.
Gloria:
My local allergist told me about AYVAKIT. She was concerned because I had had 3 ER visits fairly close together and she wanted me to check into AYVAKIT. Starting AYVAKIT, has really helped me manage my symptoms. I felt like the spots on my chest were improving. I’ve only had one GI episode. I have had less fatigue in general and I have felt more energized. I could do my photography and travel. I want to finish traveling to the 5 states that we haven’t seen. I want to go snow skiing again. I want to be a person who can help somebody that’s going through what I’ve gone through for the last 22 years. Deciding to take AYVAKIT is the best decision I could have made with my doctor. With AYVAKIT, I can treat the source of ISM.
Text on Screen:
Treat the source of ISM
Gloria:
Mastocytosis messed with the wrong girl.
Text on Screen:
[AYVAKIT logo]
Images and voices of patients and caregivers used with consent.
Text on Screen:
WHAT IS AYVAKIT® (avapritinib)?
AYVAKIT® (avapritinib) is a prescription medicine used to treat adults with indolent systemic mastocytosis (ISM). AYVAKIT is not recommended in people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
IMPORTANT SAFETY INFORMATION
AYVAKIT® (avapritinib) may cause serious side effects, including:
Cognitive effects. Cognitive side effects can happen during treatment with AYVAKIT and can be severe. Tell your healthcare provider if you develop any new or worsening cognitive symptoms including forgetfulness, confusion, getting lost, trouble thinking, drowsiness, trouble staying awake (somnolence), word finding problems, seeing objects or hearing things that are not there (hallucinations), or a change in mood or behavior.
Skin sensitivity to sunlight (photosensitivity). Your skin may be sensitive to the sun or other forms of light (photosensitivity) during treatment with AYVAKIT. Avoid or limit exposure to direct sunlight, sunlamps, and other sources of ultraviolet radiation during treatment and for 1 week after stopping treatment with AYVAKIT. Use sunscreen or wear clothes that cover your skin if you need to be out in the sun.
Before taking AYVAKIT, tell your healthcare provider about all of your medical conditions, including if you:
- History of bulging or weakening of a blood vessel wall (aneurysm) or bleeding in your brain
- Have a history of stroke within the last year
- Have low platelet counts
- Have or have had liver problems
- Are pregnant or plan to become pregnant. AYVAKIT can cause harm to your unborn baby
- Females who are able to become pregnant: Your healthcare provider should do a pregnancy test before you start AYVAKIT. You should use effective birth control (contraception) during treatment with AYVAKIT and for 6 weeks after the final dose of AYVAKIT. Talk to your healthcare provider about birth control methods that may be right for you. Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with AYVAKIT.
- Males with female partners who are able to become pregnant should use effective birth control (contraception) during treatment and for 6 weeks after the final dose of AYVAKIT.
- are breastfeeding or plan to breastfeed. It is not known if AYVAKIT passes into your breast milk. Do not breastfeed during treatment with AYVAKIT and for at least 2 weeks after the final dose of AYVAKIT. Talk to your healthcare provider about the best way to feed your baby during this time
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. AYVAKIT may affect the way other medicines work, and certain other medicines may affect how AYVAKIT works. Especially tell your healthcare provider if you take estrogen-containing hormonal birth control or medicines that prevent blood clots.
Do not drive or operate hazardous machinery if you have confusion or trouble thinking during treatment with AYVAKIT.
The most common side effects of AYVAKIT in people with ISM include: swelling around your eyes, dizziness, swelling of your arms and legs, and flushing.
Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with AYVAKIT if you develop certain side effects. AYVAKIT may cause fertility problems in females and males. Talk to your healthcare provider if this is a concern for you.
These are not all of the possible side effects of AYVAKIT. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088 .
Please see the link above for full Prescribing Information, including Patient Information for AYVAKIT.
© 2025 Blueprint Medicines Corporation.
11/2024 USOTH24.0021.2
Meet Gloria
“Deciding to take AYVAKIT for my ISM is the best decision I could have made with my doctor.”
Gloria was diagnosed with ISM in 2002 after years of complicated symptoms. To treat the source of her ISM directly, her allergist prescribed AYVAKIT. Watch the video to hear more of Gloria's story.
Gloria has been compensated by Blueprint Medicines for sharing her story.
Interested in sharing your story?
Your story can inspire others. Consider sharing your ISM treatment journey and learn more about becoming an AYVAKIT ambassador. Whether it's the challenges you've overcome or the progress you've made, your experience can help others feel less alone.
Fill out the form below or call 1-833-424-2807 to get started.
Interested in sharing your story?
Your story can inspire others. Consider sharing your ISM treatment journey and become an AYVAKIT ambassador. Whether it's the challenges you've overcome or the progress you've made, your experience can help others feel less alone.
Fill out the form below or call 1-833-424-2807 to get started.
All fields required unless otherwise noted.
Talk to someone who gets it
Speak to an AYVAKIT Mentor who understands ISM, and can share their personal experience, and how they navigated their ISM treatment journey.
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Find out how we can support you at every step of your treatment journey with personalized one-on-one support, helpful resources, and financial assistance options. Call 1-888-BLUPRNT (1-888-258-7768).