Drop set up to raise funds for further treatment.

Good Morning,

My name is Rafal and I need your help.

For the past 4 years I have been suffering from a rare of ultra rare life-threatening disease that destroys an important part of the blood. The disease is characterized by destruction of red blood cells, blood clots and bone marrow dysfunction (not enough of these three blood components).

The median survival after diagnosis without required treatment is 10 years;

Since 2012, my hemoglobin level has dropped successively 1g per year since 2012 to a level of 8g, and my liver tests have shot up sharply, 4 x above normal. I have been to many specialists for several years, but no one was able to make a proper diagnosis. I also consulted the condition in Germany - there were suspicions of cirrhosis of the liver and pancreatic cancer - LDH ( an intracellular enzyme, released into the blood when, due to disease processes, damage and death of cells occurs ) normal up to 480 U/L , pancreatic cancer is about 650 U/L , I had 2067 U/L units.

I returned to the country and all in nerves I inquired further.

Reality -The fight against the disease continues

I was diagnosed only at the Institute of Hematology in Warsaw in May 2017 - diagnosis of nocturnal paroxysmal hemoglobinuria (PNH), chronic disease, prognosis is unfavorable and no access to the drug at this time - price of 2 million zlotys per year and there is no mistake here.

Since then, I began, together with other patients (the estimated number of patients with a diagnosis of PNH in Poland, as determined by clinical experts, is 53 to 100 patients) to seek refinancing of the drug by the State . By some miracle, it gave.

In August 2018, I was qualified for the drug program, and in September 2018, treatment began.

In October 2021 I had the highest defect - granulocyte clone- 91.58 %, and this means that as a result of not taking the drug I am left with normal red blood cells 8% which may have further consequences in the form of clots in the liver or brain.

I am in the process of treatment or perhaps maintaining the parameters of the morphology at an "appropriate level" that allows me to function fairly normally.

The prognosis of doctors of my condition - distant uncertain, and the prognosis of recovery - unfavorable.

Due to the highest stage III of the disease, I experience various levels of fatigue, which prevents me from performing a very basic level of life activity. Given the ongoing destruction of red blood cells, I am chronically fatigued, and the chronic anemia resulting from hemolysis exacerbates this fatigue.

In order for me to function fairly normally as of today, I have to take a drug every 14 days for the rest of my life in a hospital setting.

The disease reduces my immunity (low levels of red and white blood cells), I often get life-threatening infections (most recently covid - 3 x vaccinated, here I add a mild passing of the disease and pneumonia).

Due to my conditions, I have a disability certificate and I can not take up professional activity,

What I am collecting for.

I am collecting for the continuation of treatment.

I currently receive a sickness pension of 1240 PLN.

Rent for an apartment in Cracow is an expense of 800 PLN.

The hospital, the Institute of Hematology and Transfusiology in Warsaw, where I receive specialized care and am administered medication twice a month is located 300 kilometers from my home, and the cost of travel and accommodation is another expense of 900 PLN a month, which is no longer enough for me.

The purchase of supplements is beginning to exceed my financial capabilities, and necessities are very often out of reach for me.

Every even the smallest donation counts.