Coping with a rare disease

About two years ago, I got diagnosed with a rare disease known as porphyria cutanea tarda. It's a disease that mainly effects the liver but the symptoms appear on my skin too. I'm extremely sensitive to UV light to the point I get burned no matter how strong/how much sun screen I have on. It caused me a lot of insecurities. I'm 21 and here I am trying to cover those burn marks on my skin with makeup but that doesn't even help. I was wondering if there's anyone coping/battling a rare disease. I think it would be nice to know that you're not alone ❤️