13 May 2015

Ichthyosis Awareness Month - Gene's story: "It's my job to spread the word of Ichthyosis because a doctor can't teach or treat what he or she has not learned."

This post contains a description of graphic violence. Helplines are a the bottom of this post. 

Gene has overcome family tragedy, lack of information and delayed diagnosis to now be a proud spokesperson for Ichthyosis awareness. Embracing the support of the online community, Gene is providing an excellent example to his children who also have Ichthyosis Vulgaris.

Meet Gene.

"Hello, I’m Gene and me and my kids suffer from Ichthyosis Vulgaris. We are from Macon, Georgia, USA.

As a child, I didn't know if I was born with Ichthyosis or not.

I don't remember much about my childhood, my grandmamma raised me.

My mother had epilepsy. When I was 8 months old, she was watching me and my brother and my father came in from work and shot and killed my mother while she was in the shower.

This is why I don't know too much about my family.

I do remember that in 1st grade my teacher would put lotion on me and I was made fun of A LOT.

I know I’d wake up having bed sheets stuck to my back from the cracks that had bleed that night. My grandmamma would always put lotion all over me.

I can remember I thought I was just someone that had very, very dry skin.

People would call me “fish gator boy” because I had scales. This led to a long life of embarrassment. I struggled to have friends, finish school and have a girlfriend.

I was finally able to see a dermatologist when I was 16 and they diagnosed me with Ichthyosis .

My grandmother told me that my mother had epilepsy and died, and that while she was carrying me all the medicine she took dried me out.

One Christmas, I had gone up into the attic to get Christmas stuff down for my grandmamma and found a box that hid the truth about my mother and found out that she was murdered.

After that I fell apart and started using drugs and alcohol to cover my pain.

As time went by, I stayed in fear of being in public, as I had not been to a doctor in a long time.

I went years without any doctors to see about my skin disorder. And when I did go, they didn't seem to know enough about Ichthyosis, except to give me lotions, and then I would not go back for a few years.

When I was in my twenties, I met a woman that did not care about my condition. I finally found a part of something called love.

We got married and are still married to this day. We have three girls and one boy, and my youngest daughter and my son have Ichthyosis.

We are just now able to find someone that will even pay the slightest attention to our condition.

I will not show or say my kids’ names so as to protect them from the hate and mental and physical abuse I went through. No, we are not ashamed of who, or what we are today; and I've been sober for some years now.

I have just recently found FIRST – the Foundation for Ichthyosis & Related Skin Types. Through FIRST and all the support I have through parents of, and friends of Ichthyosis, I was just recently able to get a lot of info about Ichthyosis. Info about causes and conditions and support groups and I gave this to my doctor and right away she got me a letter. Now I can get some cream and take care of my family.

I am overwhelmed with the support I have gotten from friends and families of Ichthyosis. In just one week a friend of Ichthyosis mailed me and my kids essential oil, handmade soaps and oils. For that we are blessed.

Now I think it's my job to spread the word of Ichthyosis because a doctor can't teach or treat what he or she has not learned. I hold my head high and so do the kids, for the beauty of a person is shown by grace, attitude, support and love. We do not have to be ashamed of what we are, but to be blessed by who we are."

If you are in Australia and need help with some of the issues Gene has mentioned, contact the following services. Equivalent services are available in other countries. 

1800 RESPECT (1800 737 732): 24 hour, National Sexual Assault, Family and Domestic Violence Counselling Line for any Australian who has experienced, or is at risk of, family and domestic violence and/or sexual assault.

Safe Steps Family Violence Resource Centre: 1800 015 188. Safe Steps' mission is to "Be the voice for the prevention and elimination of violence against women and children by providing a state-wide immediate response that informs, protects and connects women and children so they are safe."

Men'sline: 1300 78 99 78: MensLine Australia is the national telephone and online support, information and referral service for men with family and relationship concerns. The service is available from anywhere in Australia and is staffed by professional counsellors, experienced in men’s issues.

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.

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  1. Thank you carly, your amazing I love to read your blog's everyday thank you for getting my story and everyone else story about ichthyosis and abuse out there I hope that one day someone will read this and it will help them.help them not to be afraid to speak up and get help weather it's ICTHYOSIS or any thing else related to our story's.your such an amazing person with a great attitude about everyday living.again that's so much for helping us reach out especially this month for ichthyosis awareness.much love.....


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