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“Living with a rare disease is like walking across a minefield”

 Lice v lice - Macedonia 04 May 2019

Vesna Aleksovska is the chairperson of the Rare Disease Association “Life with Challenges” in Macedonia. When she was seven, Vesna was diagnosed with Gaucher’s disease, a genetic disease in which fatty substances accumulate in cells and certain organs, causing fatigue, anemia, enlargement of the liver and spleen, bruising and brittle bones. She writes a personal essay about the struggles faced by those living with a rare disease, why many patients feel stigmatized and alienated from society and why acceptance and understanding is essential, not just from society as a whole but, most importantly, by rare disease patients themselves. (2223 Words) - By Vesna Aleksovska

Lice v lice_Rare diseases

Vesna Aleksovska, chairperson of the Rare Disease Association “Life with Challenges” in Macedonia, poses alongside fashion designer Tanja Kokev for Macedonian street paper Lice v lice's rare disease photo campaign.  Credit: Tomislav Georgiev

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