MY CARPA

After enduring a long journey through years of unusual and severe allergies, some life-threatening, along with other distressing and painful symptoms, plus extensive medical evaluations marked by painful procedures and lengthy hospital stays, I finally received a diagnosis from Karolinska.

I was diagnosed with CARPA, which stands for Complement Activation-Related Pseudoallergy, a rare and complex condition that significantly disrupts the normal functioning of the immune system.

CARPA symptoms are triggered by the activation of the complement system, a part of the immune system that typically helps fight infection.

CARPA is particularly difficult because, unlike a condition with typical allergic reactions involving an overactive immune response to allergens, CARPA Symptoms cause the body to overreact without the immune system being directly responsible.

The result is a range of debilitating symptoms from severe allergies to life-threatening anaphylaxis. Additionally, CARPA is often linked to various autoimmune disorders, introducing another layer of complexity to its effects on our health and bodies.

Dealing with CARPA involves battling chronic and severe stomach pain, skin rashes, shortness of breath, a choking sensation, the risk of angioedema— a life-threatening condition— and intense itching that turns my body into a constant source of discomfort, affecting my mental well-being.

Alongside these physical struggles come emotional battles, with waves of depression and anxiety making an appearance far too frequently. The incessant itching, sleepless nights, and overwhelming fatigue create a relentless cycle of discomfort that's hard to escape.

I endure with the support from my family, friends, and doctors, who serve as a beacon of hope during these dark times, reminding me that I am not alone in this fight.

I thought that finally receiving the CARPA diagnosis was a turning point in my life.

Initially, it felt overwhelming, but I soon realized that knowing and learning about my condition marked the beginning of a possible, positive, and transformative journey.

I committed to making significant lifestyle changes to regain control over my life. I avoided all medications, eliminated certain foods from my diet, and, as advised, took the extra step of avoiding tap water; now I only drink mineral water.

With a renewed sense of purpose, I reintroduced exercise into my routine, and while some symptoms still lingered, others were better, and I could feel improvements creeping into my daily life.

Perhaps most rewarding was the fact that my hospital visits were becoming less frequent—a sign that my efforts were paying off.

This journey was far from easy, but with the unwavering support of my doctor at Karolinska, each small victory fueled my determination, and I was excited to see where this path would lead me.

Then I got diagnosed with breast cancer! It was a seismic shift in my life. The news hit me hard; I felt like I was going to lose my mind, and it crushed all the progress I'd made in managing my CARPA.

Just 18 months earlier, I had been assured that my breast growth was nothing to worry about. Yet now, I not only had to grapple with the weight of medical negligence, but I also had to confront my deepest fears and re-evaluate everything I thought I knew about my health and my future.

Suddenly, I found myself caught in a chaotic whirlwind of uncertainty, confronted with the harsh reality of a mastectomy, radiation therapy, and anti-hormonal treatment.

It felt as though my life was slipping away, and I was driven by an urgent need to reclaim control from Carpa and the cancer that threatened to invade my body and take my life.

Unfortunately, I could not avoid either the surgery, radiotherapy, or the ten-year anti-hormone treatment. As a result, several Carpa symptoms were triggered and continue to be triggered today.

While Carpa has completely changed my life, it has also altered my perspective, teaching me to persevere as I learn from my body's reactions to medications, chemicals, and other triggers.

Unfortunately, after the mastectomy and cancer treatments that triggered the Carpa symptoms, managing my Carpa and overall health today requires crucial trade-offs.

To prioritize my health and try to manage the side effects of my Carpa triggered by the cancer treatments, I need to take strict precautions like avoiding unnecessary medications and other chemicals but also all public places such as restaurants, malls, grocery stores, parties, plus all forms of public transportation, including trains, buses, planes, and even taxis, where germs can easily spread and force me to use medications that can endanger my health and life.