Real ISM patients.
Real change with AYVAKIT.
Discover stories of people who found a path forward in their ISM treatment journey with the help of their doctors.
Janet, AYVAKIT Patient since 2023
Meet Pete
"When I found out that there was a different type of treatment for ISM, I felt hope. Since adding AYVAKIT to my usual ISM medications, I'm experiencing fewer symptoms."
Pete is an avid writer and hopeful traveler, who dealt with GI issues and skin spots that required extensive planning around. With fewer ISM symptoms, he's getting back to making plans.
Pete has been compensated by Blueprint Medicines for sharing his story.
PETE:
I am getting back to making plans with fewer symptoms.
TEXT ON SCREEN:
Pete, Melbourne, FL
Diagnosed with indolent systemic mastocytosis in 2018
Pete does not provide medical advice.
PETE:
My wife and I are talking about where our next trip might be.
TEXT ON SCREEN:
Pete was compensated by Blueprint Medicines.
PETE:
I go out to restaurants that I wouldn't have been able to go to before because I have fewer symptoms.
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.
Individual results may vary.
PETE:
Hi, my name is Pete and I live in the state of Florida. My primary hobby right now is definitely writing.
PETE:
I do a lot of writing in the comic world and indie comics. I also do writing of short fiction. I'm big into astrophotography and looking up at night in general. I play music on the mandolin, video games.
PETE:
In my experience, I would not eat dinner the night before going and doing something because of my GI symptoms. While I still am aware of the foods that I had problems with,
TEXT ON SCREEN:
AYVAKIT is an FDA-approved drug for adults with ISM. AYVAKIT is not recommended for people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
Individual results may vary.
PETE:
… I ate dinner last night. I ate the food I have on hand.
PETE:
My daily life when my symptoms, like skin spots and GI issues, were most severe—it was really bad.
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.
PETE:
I couldn't find a way to get to work. At the time, I was working at a community college that was 2 miles away and I was starting to take time off because my digestive symptoms especially were so severe that I couldn't imagine getting in the car and getting to work 2 miles away without having to stop to go to the bathroom. The last time I traveled outside of the state of Florida was 2017.
PETE:
When I found out that there was a different type of treatment for ISM, I felt hope. Since adding Ayvakit to my usual ISM medications, I'm experiencing fewer symptoms.
TEXT ON SCREEN:
ISM signs and symptoms, evaluated in the clinical trial was abdominal pain, nausea, diarrhea, spots, itching, flushing, bone pain, fatigue, dizziness, headache, brain fog.
PETE:
AYVAKIT targets the underlying source of ISM. Before I considered adding AYVAKIT to my current ISM medications, my doctor and I talked. He told me I could see fewer symptoms at 6 months. For me, it wasn't about instant gratification. It didn't happen overnight, it didn't turn on a dime. If you're considering AYVAKIT, I would suggest talking to your doctor and educating yourself about ISM and your treatment options.
TEXT ON SCREEN:
Pete does not provide medical advice.
PETE:
If somebody's feeling very discouraged very early on in their AYVAKIT journey, I would effectively tell them to be patient and pay attention to yourself.
TEXT ON SCREEN:
Pete does not provide medical advice.
PETE:
I, I would tell them that it, for me, it was the, the realization of fewer symptoms as they occur.
TEXT ON SCREEN:
Individual results may vary.
PETE:
I've used the example of riding a bike in Florida in the Florida heat and realizing I'm, I'm, I'm not breaking out in itchy red spots. That is a thing that happened. And it was amazing.
PETE:
My routine has really changed in the way that I go out and do things all because there's fewer symptoms and fewer things keeping me at home. I feel like going out to restaurants because I have fewer GI symptoms. Now I plan trips to go places with my wife because I have less symptoms. It's more about, you know, oh, what am I packing, not where I'm going to be while I'm doing it. Because my symptoms are reduced, I don't worry about all of the travel time itself anymore.
PETE:
With less ISM symptoms, I'm getting back to making plans.
TEXT ON SCREEN:
With less ISM symptoms, I'm getting back to making plans.
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.
TEXT ON SCREEN:
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.
TEXT ON SCREEN:
[AYVAKIT LOGO]
Patient voice and images of patient and family used with consent.
AYVAKIT, Blueprint Medicines and associated logos are trademarks of Blueprint Medicines Corporation. All other trademarks are the property of their respective owners.
© 2026 Blueprint Medicines Corporation.
04/26 USOTH26.0002.1
SHAWNA:
Living with ISM, I feel like I fake being well, not being sick.
TEXT ON SCREEN:
Shawna, Evans, GA
Diagnosed with indolent systemic mastocytosis (ISM) in 2022
Shawna does not provide medical advice.
SHAWNA:
Sorry.
TEXT ON SCREEN:
Shawna was compensated by Blueprint Medicines.
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.
Individual results may vary.
SHAWNA:
My name is Shawna, and I live in Georgia. I would describe myself as compassionate, caring.
SHAWNA:
Sometimes I would say like larger than life because with my rare disease. I can tend to overcompensate for things.
SHAWNA:
So my self-proclaimed pool queen kind of started back when we lived in Kansas and my girlfriend and I would take our kids to Oceans of Fun for season passes and that was just something we would do at least three times a week.
SHAWNA:
Because of my symptoms—bone pain, and GI issues—I think it was kind of sad when it came to the moment where the things that I couldn't enjoy anymore, which is another thing that had to tick in the box of you can't do that anymore can't go to the pool anymore, can't go eat XYZ anymore.
SHAWNA:
For me personally to add AYVAKIT into my best supportive care regimen, it's helped with many of my ISM symptoms.
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, and brain fog.
SHAWNA:
I started taking all these extra medications to try to manage my symptoms, I would go to work, I would take a travel pillow and I'd take a nap during lunch just so I could make it through the day. And then like every weekend, I would just sleep. And that's not the life that I wanted. My husband at the beginning, he wouldn't leave me alone ever. He wouldn't go to the store because he was scared. I mean, we've been married for 37 years.
SHAWNA:
When I was first diagnosed with ISM and my doctor gave me the information. He told me to do my research and then make the decision that was best for me.
SHAWNA:
We agreed that AYVAKIT would be a good fit.
TEXT ON SCREEN:
AYVAKIT is an FDA-approved drug for adults with ISM. AYVAKIT is not recommended for people with low platelet counts (less than 50 X 109/L). It is not known if AYVAKIT is safe and effective in children.
SHAWNA:
I'm managing my ISM symptoms instead of them managing me. I'm not as fearful of going to the pool. I take a shower without breaking out into itchy red spots.
TEXT ON SCREEN:
Individual results may vary.
SHAWNA:
The bone pain is a lot less now, it's not like chronically on my mind anymore.
TEXT ON SCREEN:
Individual results may vary.
SHAWNA:
If you're considering AYVAKIT, I would suggest talking to your doctor and educating yourself about ISM and your treatment options.
TEXT ON SCREEN:
Shawna does not provide medical advice.
SHAWNA:
Because of my improved symptoms, the pool queen is back, at least on Sundays.
TEXT ON SCREEN:
THE POOL QUEEN IS BACK with less ISM symptoms!
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.
TEXT ON SCREEN:
[AYVAKIT LOGO]
Patient voice and images of patient and family used with consent.
AYVAKIT, Blueprint Medicines and associated logos are trademarks of Blueprint Medicines Corporation. All other trademarks are the property of their respective owners.
© 2026 Blueprint Medicines Corporation.
04/26 USOTH26.0003.1
Meet Shawna
"I'm managing my ISM symptoms instead of them managing me."
For years Shawna enjoyed going to the pool and swimming, until her ISM symptoms became too severe. Learn how AYVAKIT helped reduce her symptoms and how the Pool Queen made her return.
Shawna has been compensated by Blueprint Medicines for sharing her story.
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.
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
Connect with someone who's been there
The AYVAKIT Mentor Program gives you and your loved ones the opportunity to connect with patient mentors who have experience living with ISM and treatment with AYVAKIT. Hear their stories, ask questions and gain support from someone who understands what you're going through.
AYVAKIT Mentors are compensated by Blueprint Medicines for sharing their stories.
Share Your AYVAKIT Story
Every ISM story is unique. You may be able to help others living with ISM feel informed, supported and less alone. If selected to become an AYVAKIT ambassador, you'll have the chance to share your story with patients and their families.
Fill out the form below or call 1‑833‑594‑0355 to get started.
All fields required unless otherwise noted.
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YourBlueprint is here to provide information and educational support. Anyone can call 1-888-BLUPRNT (1-888-258-7768) to ask questions or request helpful resources.
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