What we learnt at the Australian Ichthyosis meet.

We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the Australian Ichthyosis community. I am mindful that we were in the safe space of a function centre at the zoo, and people revealed lots of personal things about themselves - so this is only a very small summary of what was shared.

The first session was a panel discussion featuring a panel of medical specialists: Professor Ingrid Winship (genetics), Dr David Orchard (dermatology) and Nurse Practitioner Emma King (dermatology).They talked a lot about the research that’s been done around Ichthyosis - locally and overseas. I didn’t want them to give false hope and talk ‘cures’ - but Ingrid said they were there to provide ‘hope not hype’. They want patients and parents to manage the condition on a day today basis rather than seeking along term solution. One exciting thing was mention of one blood test that will provide DNA data for many genetic tests - great for us needlephobes (it can be so tough having needles when you’ve got Ichthyosis).

The medical team also talked about minimising infection - they recommended the single use of towels (can you imagine the amount of washing?!), not double dipping into creams - spoon some out and spread it on a plate, or use gloves, before applying to the body (I’ve broken that rule two million times!) and also doing regular bleach or salt baths.

Morning tea was next, and this was a great time for attendees to talk to the medical team some more, and socialise with each other. Friendships were already forming by this time - so good to see!

After morning tea, we did a 45 minute activity, providing peer support in small groups and then with the larger group. This was just wonderful. All suggestions were valued, and when members of the small groups read out responses to the room, applause was given. I was so proud. Our facilitators did a great job if making everyone feel comfortable enough to share their experiences.   

The first question asked was 'How do you feel good about yourself when things get you down?’

Some of the responses included:

• “I wash my hair because I love my hair.”
• “I do things I enjoy.”
• “I spend time with friends”
• “I communicate with people who understand.”
• “I know I am not alone.”

Next up was 'How do you respond when to comments and stares?'

• "When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition."
• "I smile at the person and tell them I have skin conditions and end the conversation
• “I say 'No see I was born with this skin disorder called Ichthyosis'. Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it." 
• "I give them a business card with information on it."
• "I be strong and stand up tall. Smile."

The final question was 'What advice would you give to new parents and patients?'

• "Support your child no matter what. Give then the affection/attention they need and understand there will be tough times. Make the most of your good times and shorten the bad ones."
• "Don’t chase a solution."
• "Don’t overreact."
• "Accept the situation – it becomes your normal."
• "Seek psychological help."
• "Know that it does get better." 

Nathalie from Easy Peasy Kids asked these same questions at the play table. I loved this response to comments and stares:"Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly."

To end, we talked about what attendees would like to see after the Australian Ichthyosis Meet. What is the direction of the Australian Ichthyosis Community?

It was unanimous that people want regular meets -perhaps a national meet every second year, but regional and informal activities are encouraged. We can form a committee to develop the community into a charity. And we can all keep in touch online. I am not sure how long it will take us to develop something formal (I need a rest!) but I will be sure to keep you all informed about the next steps.

And then it was off to the zoo!

One of the mums at the meet - Maria, whose story you might remember from earlier this month, sent me a piece that her nine year old daughter Claudia wrote. She wasn’t directed to write it, she just wanted to express how the meet impacted her brother (Alexander) and her family. Claudia said I could publish a part of it.

"The following day was a special one. The reason for our trip was to meet other people with a skin disorder that my brother has. Its name is Ichthyosis (Ick-the-o-ses). This is the first time anyone has ever organised an Ichthyosis conference in Australia.

On that day, we met other people like my brother, and the great thing was, that they were our age and we made lots of friends, especially Joshua and Lucia and Calista.

We got to have lunch with them and then walked around the zoo with Lucia and Joshua as well as their mums and dads. We saw lots of animals like tigers, zebras, reptiles and a bear that wouldn’t stop beating on the glass.

After the zoo visit we all went to TGIF where the sign said ‘its always Friday at TGIF’. We went with Lucia, Calista and other people from the conference. We had so much fun laughing all night.

We were so sad that we had to leave all our new friends. I would like to thank Carly Findlay for putting the conference together and it was nice to meet her."

This is beautiful. I just loved to read about the perspectives from a sibling. I am so glad everyone felt included.

People said they were so grateful this meet had fun as its focus - rather than being entirely medical based. That is something I felt strongly about. It is so important to build connections like we did on 9 May. The friendships developed were my favourite part of the day.

If you’re looking to connect patients in your community, just do it. Don’t wait, start small and change peoples’ lives. (Soon I will write a blog post about how I organised this.)

Thank you to everyone who attended, who helped out and donated money and products. I am so grateful. 

Stasia from Photo Addix took these photos. She said: "It was truly an amazing day. So many beautiful people in one room. Well done Carly I am so honored to be able to have capture it."

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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