In Addtion

In 2019, I was diagnosed with breast cancer. I underwent a mastectomy, which resulted in a chronic seroma that has persisted for over five years and continues into 2025, in addition to a frozen shoulder.

In 2020, A Basal Cell Carcinoma (skin cancer) was surgically removed from my face, leaving a scar.

In 2021, I had COVID-19.

In 2022, I had COVID again and was investigated for colon cancer.

The journey has been and continues to be undoubtedly stressful and challenging; however, for me, it is crucial to stay updated on related medical research and learn about my conditions while also maintaining a realistic view of my limitations. Equally important is to keep an optimistic and hopeful outlook for a better quality of life.

I cannot ignore or avoid having two life-threatening and disabling conditions, nor the emotional and physical rollercoaster and mental exhaustion that come with them.

However, staying positive makes me stronger and helps me deal with my health issues more effectively.

Based on my experience, not all medical professionals adhere to the same standards. While physicians vow to prescribe only beneficial treatments and to avoid causing harm, I have come across some individuals who demonstrate a lack of empathy and professional responsibility, showing little concern for their patients.

Like the doctors who prescribed medications blindly and without a diagnosis, leading to the deterioration of my condition and triggering angioedema several times to the point that I was unable to open my eyes or breathe, I was also sent home with no diagnosis or help, despite my body being racked with pain and rashes.

Nevertheless, the most negligent doctors I have encountered were the oncologists at Sophiahemmet, Christinaklinken. These physicians were so eager to go on vacation that they not only misdiagnosed my cancerous tumor and refused to remove it, but also completely forgot about me and allowed my breast cancer to progress for nearly two years without my knowledge.

So much for the Hippocratic Oath!

However, today I am incredibly grateful to have found doctors who are responsible, medical professionals, and compassionate, empathetic individuals who are helping me on my way to a better quality of life.

An orphan disease is defined as a condition that affects fewer than 400,000 people worldwide. However, some diseases have patient populations of fewer than 100. This includes diseases as familiar as cystic fibrosis, Lou Gehrig's disease, and Tourette's syndrome, along with less well-known ones like Carpa, Hamburger disease, and acromegaly. New rare diseases are discovered each year.

Most conditions are inherited and caused by mutations or defects in genes, while others can be acquired through environmental or toxic factors. Genes, which are segments of DNA, constitute the instructions that determine the traits and characteristics of all living organisms. Each human cell contains about 30,000 genes. Genes can influence features such as eye and hair color, and they can also play a role in the development of diseases and their transmission from parent to child.

CARPA is an "orphan disease" that has no treatment, medication, or cure.