Ichthyosis is tough. Though I will never know how "tough" it actually is, I just have to witness it. I can't imagine what it would be like to live with but if I could trade places with Evan, I would in a second. Yet with all things considering we have been incredibly fortunate. Evan was born in one of the best hospitals in the country with Ichthyosis experts there waiting for his arrival. We have an incredibly supportive family that would do anything to help us. Our friends have been at our side and our community has welcomed us with open arms including us in a number of charitable events. My husband works hard to provide for us and is able to give me the opportunity to stay home and care for Evan. We have a good life. It makes having or caring for Ichthyosis a bit less stressful.
Some others are not as fortunate and hold a lot more burden than we do. Some are born in different countries with medical professionals who are uneducated about the condition unable to provide up to date treatments. Some individuals are rejected from society and thought of as a person who could be harmful to others. It is unfortunate these circumstances exist but it is reality. At least there is something we can do about it.
For one, educating others about Ichthyosis is incredibly important. A major reason why I support FIRST is because they can provide others with the accurate information about Ichthyosis and its current research and treatments, thanks to medical experts. Allowing medical experts to share this information with others in the field will lead to more accurate diagnoses and treatments for survival. Educating the public is just as important. It allows an opportunity of acceptance without judging. As Ichthyosis is a very physical condition many are scrutinized by their appearance. That is why raising awareness is so important.
Carly, a good friend of mine, is the author of Tune into Radio Carly. She writes about her life personally and professionally while living with the Netherton's Syndrome form of Ichthyosis. She is a motivational speaker and appearance activist. She seems to always be taking time to help others (including a month long series of shared stories during Ichthyosis Awareness Month).
One story in particular stood out. A woman with Ichthyosis who lives in India. Tina's story is very moving and really reminds me of how fortunate my family is. Here are some of Tina's words from Carly's Blog :
"At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive."
She's been through a lot and continues to do so on a daily basis. Please take some time to read her story HERE. Fortunately, Carly has decided to make a move to help a friend in need. She set up a My Cause Page to help gather donations to buy medical equipment and necessities to help Tina at a time in need. Please consider making a donation or passing along this story to help a woman who deserves it. We have been so fortunate to receive so much help from others including strangers that I'd like to return the favor. My donation has been made. Kind deeds do not go unseen!