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[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.
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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.
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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.
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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.
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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.
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Treat the source of ISM
Gloria:
Mastocytosis messed with the wrong girl.
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[AYVAKIT logo]
Images and voices of patients and caregivers used with consent.