I will be 29 on 12/17 and I also have a younger brother (26) with Lamellar Ichthyosis. Going through Elementary School is difficult enough these days due to the fact that kids are so mean and critical at that age, especially when they see someone who is "different". I suffered a lot of hateful comments and the ONLY way that a child will be able to overcome feeling ashamed of themselves is by First and formost, having parents who do not allow us to feel sorry for ourselves and help us to realize that we are not "different" but special. I know exactly how your son feels. He is felling like he will never be accepted and that he will always suffer cruelity from his peers. UNTRUE. The only way that your son is going to feel happy with who he is, is by constantly praising him and teaching him that we are all different is some way. Every child is struggling with some form of bad self image. I struggled with accepting myself and learning to love myself because I know that I would not be all of the wonderful things that I am if I had not been born with LI. I will warn you that because of the fact that we cannot retain moisture and are unable to perspire, sports that you mentioned may only make him feel worse about himself. My parents put me in basketball in my elementary years and it made me feel more like an outcast because I was given "special treatment" If I became overheated I would be put on the benvh and they would bring me cold rags, ice and water. While their efforts to accomodate me was a nice gesture, it only made me stand out more. I eventually realized that this disease is part of who I am and I am proud of that person. I was a cheerleader in school, I had many friends, an incredible social life with the boys. I had a lot of boyfriends and was considered one of the most popular kids in my school. I am telling you this only to give you hope as a parent that there will be a sense of normalcy in not only your sons life, but yours as well. I am engaged to a wonderful man, I have a four year old son who does not have LI. I can honestly tell you that I know what he is going through and I for certian know that if I had an older person with LI to tell me their stories and could have had someone to relate to, it would have been much easier. My brother is younger than me, so I was that mentor for him. I did not have one. If I could relay a message to your son that any questions he has whether they be socially based or if he has questions about his skin..Will it change? What can I do to make it better? Will I ever be accepted? Will I ever find peace with having LI and realize that I am blessed, not cursed by having LI. I can honestly say that if I could start all over in life and be born with what society considers to be "normal", I without question would not do it. Living with LI has made me more considerate of all people, it has given me more strength than I ever thought I could have. I have the greatest life. Yes, it is a headache sometimes and sadly your son will face issues of not being accepted and will be the target of cruel children and sometimes even adults, but he is not alone and it seems to me that he has a pretty terrific mother who will be by his side to deal with all of the issues he will face and THAT is the key to him feeling good about himself and he will determine his self worth, no one else. I know that this is difficult for you as his mother too. I want to tell you that I would like to offer you advice or answer any questions you may have, for any reason at all. I know that it is just as scary for you as it is for him and I had just about the best mother in the world and SHE made it okay for me, let me make it okay for you, as his mother. There is no question you could possibly have that I could not answer. Here is my email address and please DO NOT hesitate to email me every day if you like, firstname.lastname@example.org.
I would love to see pics of your beautiful son and I would be more than happy to send you pics of myself and my brother. I feel that if your son is able to see pictures of people just like him doing the same things that everyone else does, he won't feel alone. My brother is a master guitar and piano player/singer. I have pics of me as a cheerleader, as a Mom and with my loving fiance. Neither of my parents have LI and they had four children. I have a older sister without LI and two younger brothers, one with it and one without it. I feel like I came across this site and read your posting for a reason and I do not believe in coinsidence. I plan on keeping in constant touch with you and your family so that you as a mother may not have to go through what my mother did 29 years ago when I was born and there was little to no education on this disease and for your son who I know feels all alone. Take Good Care of yourself and KEEP taking such good care of your son. Warmly, Nancy
Nancy C. Wilson