For years, Suki Tipp battled unexplained symptoms—stomach pain, skin rashes, fatigue—that doctors couldn’t explain. As a busy mom of four and an outdoor enthusiast, she pushed through the discomfort until a sudden wasp sting in 2017 sent her into life-threatening anaphylactic shock. After multiple medical emergencies, a specialist finally identified the cause: indolent systemic mastocytosis, a rare blood disorder that causes the body to overreact to everyday allergens.
This condition made even common exposures—like cleaning supplies, perfumes, or fruit—potentially dangerous. Suki’s reactions became so severe that she couldn’t safely leave her home. Her life transformed completely, as she missed birthdays, school events, and simple outings. At one point, she relied on nearly 100 EpiPens in a single year. Her children were taught how to save her life, and her home became her only safe zone.
In 2021, hope came through a clinical trial testing a targeted medication called AYVAKIT. The treatment worked by addressing the genetic mutation causing her symptoms. Within months, Suki’s condition stabilized, and her health began to improve. By 2023, the FDA approved the drug, and for the first time in years, she rejoined her family in daily life, attending events, working alongside her husband, and enjoying precious moments with her children.
Now, Suki shares her story to raise awareness and encourage others with rare or misunderstood illnesses to advocate for themselves. Through faith, family support, and medical innovation, she found her way back to life. Though she still takes precautions, Suki is no longer surviving—she’s thriving, determined to embrace every moment she once feared she’d miss.