What is Carpa? Complement Activation-Related Pseudoallergy
For more than a decade, I have endured the symptoms of Carpa without the aid of any medication or treatment. Some of these symptoms have a significant impact on my daily life, affecting my overall well-being and quality of life.
Regrettably, in the absence of resources for discussion, comparison, or research, my sole method of understanding and learning about this rare disease and its symptoms has been through personal experience, which is frequently stressful, painful, and sometimes life-threatening. This persistent struggle is draining and relentless.
Having lived with Carpa for many years, I have gained certain insights into it; however, managing the precautions needed to avoid triggers is solitary and never-ending. While this is a difficult and lonely task, I find comfort knowing that a better understanding of this disease can lead me to more freedom and a higher quality of life.
Unfortunately, to gain a deeper understanding of this condition, my personal experiences are not enough; I need support from the medical community to conduct tests and explore various therapies and treatments. Without this support, my hope for a better quality of life and a brighter future remains out of reach.
Navigating this health nightmare is exhausting, overwhelming, and mentally draining; my resolve and strength are tested every day, and there are moments when I feel like I might lose my mind, but I remain hopeful.
CARPA is a type of hypersensitivity reaction that does not involve IgE antibodies. Unlike typical allergies, CARPA can be triggered upon first exposure to a medication, test, or treatment.
The symptoms can vary widely, ranging from mild to severe. Some symptoms, such as different types of rashes, hives, and other skin issues, are easily observable, as illustrated in these photos. However, other symptoms such as stabbing stomach pain, choking, shortness of breath, fatigue, chronic insomnia, chest pain, back pain, angioedema, and potentially deadly anaphylactoid reactions are not visibly apparent. Carpa signifies a fierce internal conflict, a relentless fight that impacts both internal and external organs, as well as the immune system.
Carpa is an orphan disease with no financial support from Big Pharma, so there are currently no available treatments or cures.