Finding Strength and Hope Living With Indolent Systemic Mastocytosis: Gloria’s Story

Video Resources:

• Prescribing Information
• Patient Information

Gloria’s Video Transcript

Text on Screen:

AYVAKIT (avapritinib) 25 mg tablets

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 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.

Gloria: Looking back, my first symptom was fatigue. Extreme fatigue. I didn’t want to do anything. I didn’t want to go any where, 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 (avapritinib) 25 mg tablets
Images and voices of patients and caregivers used with consent

Voiceover and 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 full Prescribing Information and Patient Information for AYVAKIT.

 

11/2025 USAVA25.0167.1
AYVAKIT, Blueprint Medicines and associated logos are trademarks of Blueprint Medicines Corporation.
© 2025 Blueprint Medicines Corporation.