Living as an Adult with Ichthyosis: a guest post

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?!

In recent years, I have become so much more confident with my Ichthyosis. I have been sharing my story on my blog for around three years (though have been blogging for many more – leaving out the stuff about Ichthyosis as I chose to remain somewhat anonymous online). My appearance used to keep people away from me – for it was hard at school; kids thought they would catch it – but now it’s my brand. Blogging has led to writing and TV work, speaking and becoming somewhat of a consultant in the social aspects of Ichthyosis, looking different and social media. While I was once strictly a patient at my dermatology clinic at the Royal Melbourne Hospital, I am now giving speeches to dermatologists and geneticists! I was also invited to speak at the Appearance Matters conference at a university in England after the Centre for Appearance Research found my blog. (You can read that speech, and more about me in greater detail here.)

Like Courtney and Evan, my parents did not know I had Ichthyosis until I was born. They had also just moved to Australia from South Africa and England, so I imagine their life was shaken up a lot. The doctors did not expect me to live. And though I had some very sick months as a baby, and lots of stays in the hospital as a child (and a few as an adult), I’m doing OK. My parents were great in bathing me, applying my creams and combing my scalp until I could do it myself. They took me to the dermatologist in the city and to hospital several times a year. They have been fantastic! 

I’m not going to lie – things have been hard. I’ve been bullied as a child and adult, been ordered out of a store because the owner thought my cream would ruin the clothes she was selling, been told I’m ugly and disgusting, and been told I should be dead because of the way I look. But I have supportive parents, colleagues and friends which makes the difficult times easier.

My parents encouraged me to do everything that other kids did – though I am not one for sports (unless you count extreme shopping). I got good marks at school – excelling in English and History, went on to university to study a Bachelor of eCommerce, and worked part-time at a department store through the last year at high school and during my degree. It was at university and the store where I found my first real friends; they accepted me for who I am – Ichthyosis and all – and also learnt to handle the stares and comments in a professional way. It is tiring when people stare and comment on my appearance, but I am able to answer it in calm and simple way – “I was born like this”. 
When I was 21, I moved from the small country town (population 200) to the big city of Melbourne (population 4 million) to commence my first full-time job at the government. I love living here; I love the independence and the friendships I’ve made. I love blending in to this big city – while I do get stares, especially in the hot summer, this city is diverse and appreciates diversity. Because of my little media career, I sometimes get recognised as a writer or TV presenter by people in the street! It’s nice to be stopped and spoken to positively.

In recent years I have identified with having a chronic illness (after mentoring a group of amazing young people with chronic illnesses at the Children’s Hospital), and also as a member of the disability community. I have made so many friends and professional contacts, and when I’m in that community, I feel such kinship. In September 2012 I judged a disability film festival in Melbourne, and while exhausted from watching around 35 films in five days, plus going to work on three of those days, I loved meeting the people involved and seeing the films. Our disabilities may be very different, but we could all relate to society’s perceptions of disability, access and inclusion issues, and the humorous side to disability. 

Despite my appearance, I’m not afraid to have my photo taken – though I tend to put my ‘best face forward’ online and out of the house – as I never want people seeing me with infection at my worst. I believe everyone has the right to feel beautiful and express their own beauty. When at the film festival, I met New York fashion photographer-turned-social entrepreneur Rick Guidotti, founder of Positive Exposure. He talked about his work taking photos of people with a whole range of generic differences and disabilities, making them feel good about themselves and showcasing genetic difference and disability in a positive way. I think I met my hero in the appearance diversity field. He took photos of me, and we did an interview for TV and my blog. I encourage anyone with a visible difference to spend some time with Rick. 

Sometimes I feel like I have to prove I am more than a red face, because people expect my life is so much worse than theirs. I strive for high marks in study, I push myself with my writing, and I fit so much into my life that I get tired, and sometimes very sick with sore skin. But while I am fit and as healthy as anyone can be with Ichthyosis, I’m going to live life to the full. And have a laugh along the way. Especially at the assumptions that people make about my skin. 

I don’t ask why Ichthyosis “happened” to me. It is what it is. A genetic condition for which currently there is no cure. I’m not in search for a cure – I’ve been there as a child and it was tiring. I don’t blame my parents for carrying the recessive gene, and I don’t wish I didn’t have Ichthyosis. I am proud of who I am and the life that Ichthyosis has afforded me. I don’t want sympathy from strangers, for I’m living with this illness, not dying from it.

I’ve been reading Blessed By Brenna since January 2012, and while Brenna’s life was hanging in the balance, one of the first comments I left for Courtney and Evan was that when Brenna gets out of this difficult patch, her life will be a great one. And now that I’ve been reading for almost a year, seeing Brenna develop (I love that smile), and the love and positive attitudes that Courtney, Evan, Connor and all of you readers have for Brenna, I know she will be OK. More than OK.

Comments

  1. Anonymous says

    Carly…you are beautiful inside and out. True friends love a person for their attitude and their heart…you are loved! Thanks for sharing Carly’s story Courtney.
    Pete and Judy Olesen

  2. says

    Wonderful post Carly!!! (And Courtney!) Thank you for sharing your story. Those baby pics are just precious!! Thank you for being such a positive inspiration!!! :-)

  3. Mynde Sorby says

    I thank Carly and Brenna for being inspirations to the people of this world. I have two boys whom I’ve always taught that God makes everyone unique, just because someone may look different than you or have different beliefs than you doesn’t mean they are different. I tell them that God made all of us with His love therefore we should accept everyone. Reading about Brenna and Carly helps me show my sons just how special people are. Brenna and Carly are inspiring so many people to remember that its what is in someone’s heart that truly matters. Carly, you are a beautiful woman inside and out. I am so sorry that you have had to deal with people saying horrible things to you. Continue to be the strong, beautiful woman that you are! Brenna, as you grow up in this world sometimes you’re going to have hard days but remember the love that your mother, father and brother have for you. Their love is unconditional and together they can help you conquer the world! Thank you for sharing your story with the us.

  4. says

    Thanks so much for your adult perspective. I find it more than disappointing that someone should say to you you should be dead…because you look different. So shallow. I find it encouraging that you have found so many others to bond with over your differences through your work and volunteering. Thank you for sharing, educating, and helping others. What a difference you make!

  5. says

    You are a beautiful woman and I know you will be an amazing role model to Brenna in the years to come. God Bless you for sharing your story and reaching out to others afflicted with this disorder.

  6. Anonymous says

    Carly…you are beautiful inside and out. True friends love a person for their attitude and their heart…you are loved! Thanks for sharing Carly’s story Courtney.
    Pete and Judy Olesen

  7. says

    Wonderful post Carly!!! (And Courtney!) Thank you for sharing your story. Those baby pics are just precious!! Thank you for being such a positive inspiration!!! :-)

  8. Mynde Sorby says

    I thank Carly and Brenna for being inspirations to the people of this world. I have two boys whom I’ve always taught that God makes everyone unique, just because someone may look different than you or have different beliefs than you doesn’t mean they are different. I tell them that God made all of us with His love therefore we should accept everyone. Reading about Brenna and Carly helps me show my sons just how special people are. Brenna and Carly are inspiring so many people to remember that its what is in someone’s heart that truly matters. Carly, you are a beautiful woman inside and out. I am so sorry that you have had to deal with people saying horrible things to you. Continue to be the strong, beautiful woman that you are! Brenna, as you grow up in this world sometimes you’re going to have hard days but remember the love that your mother, father and brother have for you. Their love is unconditional and together they can help you conquer the world! Thank you for sharing your story with the us.

  9. says

    Thanks so much for your adult perspective. I find it more than disappointing that someone should say to you you should be dead…because you look different. So shallow. I find it encouraging that you have found so many others to bond with over your differences through your work and volunteering. Thank you for sharing, educating, and helping others. What a difference you make!

  10. says

    You are a beautiful woman and I know you will be an amazing role model to Brenna in the years to come. God Bless you for sharing your story and reaching out to others afflicted with this disorder.

  11. Anonymous says

    I have a question, which is how do the types of icthyosis differ? It sounds like Carly and Brenna have slightly different variants, by the name that Carly gave?

    I in no way want to derail the thread, and I think both of you are amazing no matter what type of skin you happen to have, but I guess I’m just a little curious about whether that means there’ll be some differences as Brenna grows up, or if the conditions differ in other ways?

    • says

      Hi there
      Great question! The variations of Ichthyosis do have different symptoms. There is some information about the different types of Ichthyosis at scalyskin.org.
      The type of Ichthyosis I have causes problems with my hair – I wrote about my brittle hair the other day – and I also expect, the level of inflammation compared to other variations of Ichthyosis.
      I would think the pain, failure to thrive and social challenges may be very similar in Brenna and my lives.
      There are things that Courtney writes about that I can definitely relate to. – the moisturising, energy use/failure to thrive, the need for sleep, the discomfort of having our faces washed.

    • says

      Hi there
      Great question! The variations of Ichthyosis do have different symptoms. There is some information about the different types of Ichthyosis at scalyskin.org.
      The type of Ichthyosis I have causes problems with my hair – I wrote about my brittle hair the other day – and I also expect, the level of inflammation compared to other variations of Ichthyosis.
      I would think the pain, failure to thrive and social challenges may be very similar in Brenna and my lives.
      There are things that Courtney writes about that I can definitely relate to. – the moisturising, energy use/failure to thrive, the need for sleep, the discomfort of having our faces washed.

  12. says

    What an inspiring woman! It breaks my heart to hear how she was bullied… Who in their right mind would say “you ought to be dead because of your looks.” I’m not a violent person but that honestly makes me want to crack skulls. Carly, you are blessed to be such a strong beautiful woman, bless you and the work you do to help others find strength and acceptance.

  13. Anonymous says

    I have a question, which is how do the types of icthyosis differ? It sounds like Carly and Brenna have slightly different variants, by the name that Carly gave?

    I in no way want to derail the thread, and I think both of you are amazing no matter what type of skin you happen to have, but I guess I’m just a little curious about whether that means there’ll be some differences as Brenna grows up, or if the conditions differ in other ways?

  14. says

    What an inspiring woman! It breaks my heart to hear how she was bullied… Who in their right mind would say “you ought to be dead because of your looks.” I’m not a violent person but that honestly makes me want to crack skulls. Carly, you are blessed to be such a strong beautiful woman, bless you and the work you do to help others find strength and acceptance.

  15. Kathy S says

    Carly – You are such an inspiration not only to Brenna and the Westlakes, but to each and every one of us reading your story. Thank you for sharing. You touched my heart. Blessings to you!

  16. Anonymous says

    You are a true hero and pioneer, Carly! The grace and passion that you live your life with have most certainly helped many in the ithiosys community, and will continue to do so for many years to come. You surely will be a wonderful role model for sweet Brenna, as well. I’m so sorry you were bullied and hurt through the years. No one should have to go through such experiences. Rather than be bitter, however, you have used these negative things to grow and prosper. You are truly an inspiration. Because of you, and because of the tireless outreach, education and advocacy proposed by Courtney and others, Brenna will have a much easier time of it. Children, especially, are so understanding and accepting when they are educated. I have no doubt that Courtney and Evan will take every opportunity to explain Brenna’s condition to those she interacts with. I don’t think things were as open when you were growing up. That, and the power of social media, have ensured that Brenna and others similar to her will benefit from this. It was a pleasure reading about you and your impressive life resume, Carly. May God continue to hold you in the palm of His hand.

  17. Kathy S says

    Carly – You are such an inspiration not only to Brenna and the Westlakes, but to each and every one of us reading your story. Thank you for sharing. You touched my heart. Blessings to you!

  18. Anonymous says

    You are a true hero and pioneer, Carly! The grace and passion that you live your life with have most certainly helped many in the ithiosys community, and will continue to do so for many years to come. You surely will be a wonderful role model for sweet Brenna, as well. I’m so sorry you were bullied and hurt through the years. No one should have to go through such experiences. Rather than be bitter, however, you have used these negative things to grow and prosper. You are truly an inspiration. Because of you, and because of the tireless outreach, education and advocacy proposed by Courtney and others, Brenna will have a much easier time of it. Children, especially, are so understanding and accepting when they are educated. I have no doubt that Courtney and Evan will take every opportunity to explain Brenna’s condition to those she interacts with. I don’t think things were as open when you were growing up. That, and the power of social media, have ensured that Brenna and others similar to her will benefit from this. It was a pleasure reading about you and your impressive life resume, Carly. May God continue to hold you in the palm of His hand.

  19. says

    Hello
    Courtney thank you for having me here, and readers, thank you all for your lovely words. I hope that I have given Brenna, The Westlakes and some of you readers some reassurance that Ichthyosis, while very difficult, doesn’t need to stop a person living a very full life.
    Thank you for reading.

  20. says

    Hello
    Courtney thank you for having me here, and readers, thank you all for your lovely words. I hope that I have given Brenna, The Westlakes and some of you readers some reassurance that Ichthyosis, while very difficult, doesn’t need to stop a person living a very full life.
    Thank you for reading.

  21. Anonymous says

    Thank you for your great story Carly. You are a wonderful, amazing woman. I hope that one day Brenna will be able to meet you and gain strength from your friendship and be able to understand some people are just ignorant.

  22. Anonymous says

    Thank you for your great story Carly. You are a wonderful, amazing woman. I hope that one day Brenna will be able to meet you and gain strength from your friendship and be able to understand some people are just ignorant.

  23. says

    We love “our” Brenna so much. There are some of us who have never met her and some who see her all the time. She is a rare gem in our eyes and it means so much that Courtney and Evan update all of us regularly. I think it is wonderful you guest posted on their blog and I really enjoyed your story. I hope you continue to act as mentor in situations where the Westlakes make have questions, etc. Thanks again for sharing your story. I am sorry you have been mistreated because of the way your skin looks. We are ALL wonderfully made in God’s eyes and so blessed for our unique and amazing qualities we can bring to this world.

  24. says

    We love “our” Brenna so much. There are some of us who have never met her and some who see her all the time. She is a rare gem in our eyes and it means so much that Courtney and Evan update all of us regularly. I think it is wonderful you guest posted on their blog and I really enjoyed your story. I hope you continue to act as mentor in situations where the Westlakes make have questions, etc. Thanks again for sharing your story. I am sorry you have been mistreated because of the way your skin looks. We are ALL wonderfully made in God’s eyes and so blessed for our unique and amazing qualities we can bring to this world.

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