You might remember Jaime from last year’s Ichthyosis Awareness Month Blog Project. She has Ichthyosis Vulgaris. Her story was one of coming out – before she read mine and others’ stories of living with Ichthyosis, she was never comfortable to tell hers. Not even to those close to her. Since she shared her story on my blog, I’ve seen her confidence and assertiveness bloom. Jaime wanted to give an update about her her year has been since we first met her. Jamie’s story is the perfect one to start off the Ichthyosis Awareness Month Blog Project – to show how much her confidence has increased and also how much she’s taking part in the Ichthyosis community.
“In May 2013, I decided to come out publicly with my genetic skin condition, Ichthyosis Vulgaris, after I was inspired by two people who both have a different type of Ichthyosis. A little baby girl named Brenna Westlake, and a young woman named Carly Findlay, who is an Australian blogger and appearance activist. I love how Brenna, her parents, and Carly both inspire and create awareness and acceptance with a condition not many people know about. You can feel their strength, happiness, and courage they bring through their words and pictures on their blogs and Facebook pages.
This inspired me to do the same. I have the mindset that awareness will increase the knowledge in the medical field, and in doing so, it might help someone get the correct diagnosis who is continually misdiagnosed, as I was for over many years for just having ‘dry skin’. Acceptance is also important. There is different forms and severity types with Ichthyosis. Many individuals experienced bullying as a child and some still do to this day as adults. It’s important that these people come out and realize their self-worth and raise that self-esteem. I’ve dealt with more racism than anything growing up and I realize people like this are just not worth my time. More importantly, I found out through Carly that a woman in New York came forward with her story after she read mine. Most awesome news ever!!! 🙂
I submitted my story last year and now I’m doing an update. My year has changed so much! I now belong on three Facebook groups that all have people with some form of Ichthyosis on it. I can’t believe there are so many people all over the world who have this. I love connecting and supporting these individuals with at-home treatments or products that work for me, and in return they share their advice what works for them. It’s nice to feel accepted and belong to these groups. Since there is not a lot of information on this condition, I felt lost until I discovered the FIRST Skin Foundation and the Facebook groups. There is no cures whatsoever for any of the many different types of Ichthyosis, so awareness and acceptance is key in order to make a difference.
I want to make a note that at the time which I wrote my story last year, I thought I was at risk for renal failure, Hodgkin’s Disease, and cancers. I read and researched it wrong. Only acquired Ichthyosis tends to have those risks. I have the inherited form.
There was a time when the skin on my face and body didn’t look as good as it does now. I was once asked, “What’s wrong with your skin?” I would get weird stares, sometimes mean comments. For the record, there is nothing wrong with my skin. I was born this way, because that is the way I was intended to be. At first, I thought it was a curse and it took me a long time to accept my condition, but I look at all the positive this awareness is doing, and I realize now it’s a gift. There is nothing wrong with people’s skin. What is wrong is society’s view on what acceptable is. Just because I don’t have skin that is considered ‘normal’, I viewed as ugly, abnormal, or whatever… Do I wish for a cure? Of course, but only from a medical standpoint, NOT a society standpoint. I don’t need your pity and I’m not doing this for personal attention. I’m doing this for acceptance, awareness, and hope, and because yes, YOU can make a difference.
The next time you see a person that you see on the street who doesn’t appear ‘normal’, smile instead of stare. If you are being introduced to them, shake their hand. If you see them getting teased, stand up for them. Imagine their your brother, sister, cousin, friend, or child…would you stand up for them then? Someday, it could be. Many people don’t know they have this up until their adults…just like me.“
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.