A huge part of parenting a child with a severe skin condition is thinking about what the future holds. Wondering if your child will be accepted by peers, worrying how school will be, wondering if she will be able to pursue her dreams and goals. What kinds of challenges will there be along the way?
From Brenna’s first week of life, we have held onto hope that as she grows up, she can be happy, she can do well in school, have lots of friends, go to college and successfully pursue whatever career or family life she wants. And this is because of older children and adults with severe forms of Ichthyosis who are happy and successful now, who have reached out and encouraged us along the way.
One of these people is Carly, who lives in Australia and has a type of Ichthyosis called Netherton’s Syndrome. Carly writes a very popular blog herself, Tune Into Radio Carly, and it always gives me hope to read about her travels, schooling and writing adventures. She has also been a great teacher to me about living with Ichthyosis – she’s always quick to respond to all my questions on twitter : ) – so I asked her if she would share with my blog readers about her life too…
Brenna and I have a few things in common. We both like shopping (I’ve seen her excitedly look though those store catalogues!), we are December babies, and we both have Ichthyosis. I have Ichthyosis form Erythroderma/Netherton’s Syndrome – scaly red skin. There’s 30 years between Brenna and I, and I am writing this guest blog post to let Brenna, her parents and readers know that even with Ichthyosis, life will be OK.
I live in Melbourne, Australia. I lead a very full life, working full time as an events planner and communicator for a department within the Australian government, and outside of my day job I keep a blog, write for various publications, speak at various community events, and volunteer my time to a community TV show called No Limits – focused on disability. I also have a big social life, spending time with friends enjoying good food, live music, shopping and movies. I have also just graduated from my Masters of Communication. And in mid-2012, I took my first overseas trip, visiting London, Los Angeles and New York. When do I find the time to live with Ichthyosis?!