I was born with a rare inherited skin condition called ichthyosis, which comes with many challenges. ASPRV1 related Ichthyosis is caused by pathogenic mutations in the ASPRV1 gene that’s encodes a protease found in the skin. The manifestations of the disease require daily bathing and exfoliating as well as the frequent application of moisturizing creams and lotions to the entirety of the body. My skin still cracks despite consistently using creams and lotions, especially in the cold and dry winter months. This complicates simple activities; for instance, walking becomes painful if the cracks happen to be on my feet. Although I experience cracks frequently, they can be well managed with additional care. As I consider cracks to be the most severe manifestation of my disease, I have always considered myself a lucky rare disease patient because of my ability to manage my symptoms and maintain a relatively high quality of life – an ability I understand is not shared by others with ichthyosis, let alone other, especially progressive, rare diseases.