17 July 2013

Meeting Valerie and Stephane - also affected by Ichthyosis.

On Monday I wrote how blogging builds and strengthens communities. My blog brings people together. I've come into contact with many people with, or parents of children with Ichthyosis through writing here. Last year while overseas I met Jack and his parents, and also DeDe. I also keep in contact with many people affected by Ichthyosis online. The Ichthyosis Awareness Month blog project brought lots of new people into my life and I think it definitely strengthened communities.

Over the weekend I met two new friends - Valerie and Stephane - from New Zealand via Mauritius. You may remember Valerie's story from Ichthyosis Awareness Month. They happened to be in Melbourne at the same time (Val lives in New Zealand after moving from Mauritius, and Steph still lives in Mauritius). They were both so warm and friendly, and it's as though we've been friends all our life.

(Coincidentally, on the same day as I met Val and Steph, Courtney, Evan Connor and Brenna met Steph, Curt and Willie all the way across the world in Arkansas.


Courtney also described meeting Steph as having a deep connection because of shared experiences. I'm sure the meeting gave Courtney so much hope for Brenna.)

Valerie and Stephane are siblings - they have a close relationship. Valerie said they really understand each other. Both are affected by Netherton's Syndrome - the same form of Ichthyosis I have. I could definitely see similarities in us all - both visually and in our discussions about our experiences.

We chatted for two hours together on the train and over brunch - we've all experienced difficulties with our hair breaking, our eyes get stringy, we get very cold (like me, Val wore four layers that day!), and our skin is the same level of redness. They both use different treatments than me - a fatty acid and glycerol, and they've been trialling some eye drops that reduce redness on their face. We have, of course, also experienced societal difficulties - the staring, insults and the ignorance. I was telling them a little about how I have an autopilot response of "I was born like this" and rarely get angry, unless it's warranted. I think this advice helped both of them a little. We all agreed that countless questions and staring is tiring, no matter the best of intentions.

Steph was returning to Mauritius that afternoon and so I dropped him at the airport. Afterwards, Val and I went for a bit of shopping, and boy did she shop! She's got a thing for turquoise - which suits her so well :) Also, Val has great hair! And they both have beautiful eyelashes which I joked that I was envious of!

The time spent with them was not limited to discussing Ichthyosis, but it was hard not to given it's the reason we met. We are all around the same age - Steph is 28 and Val is 35 - so we've experienced growing up in the same era. However, they told me it's very hard to cope with Ichthyosis in Mauritius - people don't hold back with staring and commenting (cultural ignorance and fear, perhaps?), and I expect the climate would be difficult. we talked about pain - we all agreed that the physical pain of Ichthyosis is so hard to describe. I felt it really great to articulate our shared experiences together. Steph in particular was impressed by my confidence and very thankful for me telling my story and he said that watching my 'It Gets Better' video gave him a little hope for himself. We agreed that connecting online gives people affected by Ichthyosis more hope than what we had growing up.

Years ago I was hesitant about meeting anyone with this condition. Maybe it was because of my experience with online support groups (especially the illness one-upmanship). Or maybe it was because, at dermatology conferences, I'd meet people who were forever looking for cures and pushed that expectation onto me too. Or I was scared that I didn't have all the answers about how a child may grow up for a new parent. I've learnt to let those worries go. Since I've been blogging, getting to know people through their comments and on Facebook - not just discussing Ichthyosis but showcasing our wider lives - I've been more open to it. When meeting Val and Steph (and also Jack, Julie and Danny, DeDe, and Jeff a few years ago), there was no one-upmanship, no competition of who has it worse, and friendly sharing of information about treatment rather than cure pushing. Above all, there was a great sense of knowing. I came away from our meeting on the weekend so uplifted!

When we said goodbye, we agreed to stay in touch. I'm planning on a stopover in New Zeland next year before I reach America, so I'll definitely be meeting up with Val and hopefully Steph will be there too.

Maybe it was because we were so engrossed in conversation or excited to see eachother, but I didn't notice any stares in our direction. At one point, while on the train, I was relaying a story of a tantruming child telling me he didn't want to look at my face, and so I gave his father my card - suggesting he may to read my blog post about teaching kids about visible difference, and a fellow commuter piped up to tell us what a great story that was! I guess she could see that we all faced the same issues. Being with Valerie and Stephane was like spending time with people of my own culture. Maybe having a visible difference is a culture of its own - where we can all identify with similar experiences, and all belong. We all just know what it's like. We know we're not alone. And that's a relief.



  1. Sounds like a lovely worthwhile meeting. Really interesting post Carly. Makes me think one practical way of supporting someone with a visible difference is helping arrange a meet up with someone in the same boat as them.

    It's different in many ways, but I feel that about being in LGBT groups. Suddenly we're all equal and our identities can come out.

  2. Meeting 'your' people (in an Icthyosis kinda sense anyway!) is such a comforting, relaxing sort of experience. They 'get it' - that little kernel of yourself that just can't quite be fully explained to people who haven't been where you've been. They've got the map.


  3. PS - I just wanted to quickly say that I have followed your blog for a long time now and I have seen such a change in the way you write about Icthyosis and the way it affects you. There has been such an immense period of growth for you, Carly and it's a pleasure and an honour that we get to witness that. x

  4. It's always great to meet up with other members of your "tribe" whether it's bloggers, or other Mums, or people with Icthyosis. We are so blessed these days to be able to connect online!

  5. It's great that you were able to meet others who understand exactly what it's like. I'd never actually heard of Itchyosis before, but I always suffered with rosacea growing up and the comments and stares I've gotten from that were bad enough. Can't imagine what you've been through. xo

  6. Carly I have followed your blog for a little while now and am so in awe of the great community you are building here and the fact you are changing people's lives, one person at a time. One experience at a time. Big hugs to you x

  7. Carly I think you're amazing! I have no way of truly understanding what you have faced or continue to experience. But, what I draw from reading your blog is your ability to embrace life & live it so engagingly. I know people who are considered "normal" who don't have a thumbnail's worth of the spirit you do.

    It's always lovely to meet those we consider to be kindred, it reassures us of our connection to this world, no matter where we come from.

  8. What you have had to deal with from strangers must have taken you a long time to get used to - you are obviously a strong and determined woman Carly, what a great role model. I am hell bent on teaching my children about visible difference. Kids will stare, but with parents who can guide their questions, they will learn to accept! Glad you meet such lovely people - but of course! They are Kiwis (just like me) :) Emily

  9. The best thing about blogging is making those real connections and meeting others who do actually understand - I've felt the same with meeting others who understand albinism and the challenges of autism. I'm so glad you got to meet Valerie and Stephane and had such a lovely experience with them too!

  10. They say you change the world, one step at a time. I think there's no question you're doing that. The blog community makes any distance seem small and opens up connections we never dreamed of. You're an inspiration to many :)

  11. I've met so many great people through blogging and have found it a real life line at times. I've only just discovered your blog and looking forward to reading more.


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