About 18 months ago I received an email from a young woman in America. Her name was Lynsey and she had found my blog. Her email was titled 'Maybe you can help', and in it she told me about her best friend Cassandra (Cassie) who has Netherton's Syndrome. Cassie has very little to no hair (a characteristic of Netherton's Syndrome), which was a source of bullying, and at the time of Lynsey's email, applied for a wig to help increase her confidence. Lynsey wrote:
"I hate seeing her go through this and I wish that there was something more that I could do for her other than tell her that I love her and that things won't be so hard someday. I was wondering if maybe you could help to inspire her and talk her through dealing with this disease because I can only help so much. She needs someone that can say 'I truly understand what you are going through'."
Lynsey's email showed such a beautiful, strong friendship - one friend desperate to help another. I wrote back to Lynsey and to Cassie, and we've kept in touch via Facebook ever since. Here's their story.
"Cassie and I have been friends throughout all of high school and college. Because of this, we have grown up together during some of the toughest times in life. Being the best friend of someone with a physically prominent disease has prompted many questions from strangers and friends alike. Many people assumed she had cancer because she has no hair, and I was shocked to find out all of the false information people had. My response was always, “She has a skin disease that attacks her hair as well as her skin. She does not have cancer and she is no different than any of us.”
Going into college had given Cassie even more problems to deal with because it is a crucial time to mold who you are as a person and what you are going to do with the rest of your life. I had trouble with this myself and found that Cassie had even more difficulties because of her condition. I was there for her like I had always been since high school, but I was going through many changes as well and could only help so much. I had never gone through anything similar to her situation so I honestly couldn’t relate to her to the degree that she needed.
That was when I reached out to you because she had told me she felt alone and that no one understood. I saw your website online and decided to write to you about her situation to hopefully give her someone to connect with and see that other people in this world can relate. She gained the confidence that she needed to get her wig and get out of her slump and I have honestly never seen her happier. We are now both graduating in May and plan to stay friends throughout life wherever it may take us.
You were an inspiration to her and for that Carly, I cannot thank you enough. Your support and positive attitude about life has given hope to not only Cassie but to me as well that people will one day stop judging people from their first physical impression and actually look beneath to what really makes a person beautiful. You are both beautiful people inside and out and are an inspiration to me in so many ways."
"My name is Cassandra Bernardo I am a 23 and live in the United States. As a baby I was diagnosed with Ichthyosis. As you may or may not know Ichthyosis is a genetic skin disorder that causes that skin to be very dry, flaky, also the skin could appear thick or thin. As part of my Ichthyosis I also have what is called Netherton syndrome. This is when a person’s hair grows very little or not at all. The hair also appears to be bamboo like. Because of my condition I have been hospitalized twice, once when I was 11 years old and the other time when I was 16 years old. The reason for these hospitalizations is because I can catch a skin infection very easy because my skin is always open. Also I have found that during the New England summer months my skin seems to catch an infection more easily. For most of my life I did not wear a wig. While growing up most people thought I was either and boy or thought I had cancer. This really bothered me so I decided to do something about it. A couple years ago with the help of my friends and family I was able to get a wig, this has helped with my confidence and self-esteem!
I am very lucky to have great friends and family in my life. My best friend Lynsey and I have known each other for the past 10 years and she has been by my side for a lot of what I have been through. We are just like any other friends we hang out talk, laugh, and drink wine. (lol). But, really I am very lucky to have her in my life and would be lost if I did not have Lynsey as a friend. About two years ago I was feeling really down and she did not know what to do. While doing research on my condition, Lynsey found Carly’s blog showed it to me (which has been very helpful). Another person in my life who has been very supportive is my mom. She has always encouraged me to do whatever I wanted to do.
In a couple of weeks I will be graduating from college with my BA in psychology. I currently work with children and teens that have autism or some type of diagnoses and I also work at a rehab center for women. Once I graduate I plan on working for a year or two to take a mental break and then plan or going back to school for my masters. Some of the things I love to do are cook and dance (not professionally, but for fun!). If there a song on the radio with a good beat I will be on my feet dancing. I also love to laugh and just have a good time with friends and family. When I am not in school I enjoy fishing with my family and would love to start riding my bike again."
For Ichthyosis and appearance diversity resources, click here.