SkinSerious: The Impact of Skin Disease on Patients

SkinSerious: The Impact of Skin Disease on Patients


I don’t think there’s a really good appreciation for the deep dive impact that living with the long-term chronic skin disease has on someone’s life. Eden’s life will always be a little bit different. He will always have to be very aware of his skin issues, and he will always have to use medications, and he will always have to watch out for his body overheating because that could be very dangerous. Minutes of exposure, two minutes here, five minutes there, it’s all cumulative and it will come out as skin cancer. I think Amy’s adjusted really well for having XP I mean nothing stops her. The disease affects like the whole family. I am a daughter. I am a mother. I am a sister. I am a friend, and there was a time when my family thought that I was dying, and that takes an emotional toll not only on a patient but on them. Dr. Burgy not only helped me as a patient but just as a mother, she knows how important my own health is to raising my children, and it’s just been such a different lifestyle knowing that I could just call her or email her, and I would have a response from her within minutes.

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