Fighting with c3 glomerulonephritis

The story of Esther

Hi everyone! My name is Esther and i am diagonsed with C3 glomerulonephritis after i gave birth in 2013 to my first son. My blood is full of antibodies to attack my kidney. Each patient who has this rare disease react differently to different trail treatments. I had received plasma treatment and medication ( myfortic: immunosuppressant drugs). Plasma treatment didnt work but Myfortic pulled me to a stable stage.

My few neurologists said there is a possible cure with the help of Soliris. The most expansive drugs on earth now. It costs $500,000 Canada dollar per year. This drug apparently helped a lot of people with rare disease. However, its for rich people. The drug company will not release the drug unless a patient is dying.

So i am not dying and will never be able to afford this medication. I am very thankful i am in Canada with good health system. I didn’t need to pay for my plasma treatment and my drugs are covered by my company health plan.

Happy rare disease day! Stay strong everyone!