I felt the need to post, mainly because this topic is so pertinent to a conversation I had with my grandma just this weekend over breakfast.
My mom has definitely been though a lot. But thankfully, I'm very excited to say that she's now responding very well to Soriatane - and is actually sweating!
My mother was born a collodian baby back in 1945. Those days, hardly anything was known about ichthyosis. Upon her birth, doctors told my grandparents not to expect my mother to live past her first birthday. Once my Mom proved them wrong, doctors then recommended to put her up in a home, because my grandparents would never be able to care for her by themselves and 'society would never accept her'. I just can't believe how quick doctors were to give such horrible recommendations like that back then.
My grandparents obviously raised my mom themselves, along with my aunt and four uncles. Since doctors didn't exactly know what was wrong with my Mom, they 'tested' horrible medicines and procedures on her. She also was not allowed to attend a normal public or private school - but never felt 'not normal'. My aunt and uncles definitely looked out for her, and treated her as any sibling would. There is so much love in our family, and I know it's partially because of my Mom's condition and how it brought everyone together for her. My grandparents always thought of my Mom as a blessing.
[This message has been edited by Alyssa (edited October 20, 2003).]