One of the best things about sharing stories about Ichthyosis is how it inspires others to share their story. It’s especially heartwarming when I receive emails from people saying that my blog helped them come to terms with their condition. On Monday I got this email:
“I was diagnosed with Ichthyosis Vulgaris about 3 1/2 years ago…I love what you do. You helped inspire me to come ‘forward’ into the public and actually reveal my secret. I used to be ashamed of what I have, but now I’m ready to embrace it. I hope to connect with others who have Ichthyosis too…” – Jaime
Receiving Jaime’s message made my heart sing.
It comfirmed the reason I blog.
Jaime and I have been chatting back and forth these past few days, and she told me how happy she was to be at peace with her Ichthyosis and asked how and when she can share her story! She got writing pretty quickly, because here she is!
“Hello. My name is Jaime. I am 30 years old. I was adopted as a baby from South Korea and raised in a small town in central Minnesota. Growing up, I got bullied for being Asian and I would get questions about my skin all the time. I knew my skin looked different, but I figured it was just an ‘Asian thing’. About 3 ½ years ago, I was diagnosed with Ichthyosis Vulgaris. I and my adopted parents were in shock. I never heard of it before, nor did my parents. My dermatologist said, “It’s genetic, so you probably got it from your birth parents; one or both of them probably had it.” She recommended I use Vanicream lotion and exfoliate every day with Dove body soap and use an anti-bacterial soap in-between. She didn’t explain any further on the subject.
Then, I had to play detective by researching on the internet. I suffered from all of the characteristics and symptoms of Ichthyosis Vulgaris. I’m really happy the dermatologist diagnosed me, because I finally have some answers. I was shocked there are other types of Ichthyosis as well. I found that Vanicream lotion works wonderful. I also use Amlactin lotion which actually helps with exfoliating. Dove body soap works great, but I prefer to use liquid than the bar soap, so I can scrub with an exfoliating pad. Neosporin and Hibiclens reduce skin infections. Chemical peels and microdermabraisons work great on the face for removing dead skin. I was devastated to find out I have a 50% chance of passing it on to my child, and it increases my chances of certain types of cancer, Hodgkin’s disease, renal failure, etc.; and there is NO CURE for Ichthyosis.
Currently, I’m going to college for an Associate’s in Network Security. After graduation, I wish to continue my studies for a Bachelor’s in Cyber Security. I am thankful to have been blessed by a loving family, relatives, and friends that love me for who I am, and not judge me by what I look like. I have two dreams. The first is to one day help prevent cybercrimes by either working with the government, police, or the military; and the second one is for there to be a cure for Ichthyosis.
Last Friday, I saw that May is Ichthyosis Awareness Month on the Today (NBC) show. That’s how I discovered Carly and the FIRST foundation through Facebook. She inspired me to embrace my Ichthyosis by just living life to the fullest despite diversity. Thank you Carly! I want to inspire and encourage others who might have felt embarrassed or ashamed like I did before by embracing their Ichthyosis or other skin problems instead. If people get more educated about it, perhaps we can find a cure faster! I won’t let Ichthyosis define me who I am. In the end, all that matters is that beauty is what’s in the inside, not outside.”
For Ichthyosis and appearance diversity resources, click here.