This week’s posts, all in Carly’s or their own words, not mine. As the first story illustrates, ichthyosis is more than just a skin condition. It can be more than just painful. The complications can kill. As another story illustrates, early intervention is vital.
Ichthyosis Awareness Month – Remembering Thomas. Today he would have been one year old.
Ichthyosis Awareness Month – Catherine and Alfie’s story: “The online community have been a fantastic source of information and support to us when we would have been so lost.”
Ichthyosis Awareness Month: Anna and Genevieve’s story: “But most days are our silver linings.”
Anna is such an amazing mother – I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter’s skin because people just don’t understand Ichthyosis. We’ve become great friends online.
Meet Anna and Genevieve.
Ichthyosis Awareness Month -Callie’s Story: “My skin is on me…I am not my skin”.
A 22 year old girl, whose biggest challenge is not sweating at the gym, is navigating life with her boyfriend. She is an appearance activist, who blogs at Flaws Make Life Interesting.
Ichthyosis Awareness Month – RJ’s story: “RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well.”
Ichthyosis Awareness Month – Julius’ story – “Believe that miracles happens when you least expect it.”
Ichthyosis Awareness Month – Becky’s story: “I realize that being normal is what I am.”
Ichthyosis Awareness Month – an update on Evan. “Different is special.”
I love seeing the progress Evan is making, and also reading DeDe’s perceptions of parenting a child with a disability. Evan has Harlequin Ichthyosis and he’s almost five years old. You can read DeDe’s blog and follow their adventures on Facebook.
Ichthyosis Awareness Month – Annaliese and Jossilynn’s story: “Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring.”
Today Annaliese shares her story of being a mum to Jossilynn – a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter’s skin. Such an amazing advocate. Annaliese writes that “Ichthyosis is a hard sell” – and I get this. When you read about the severity of the condition on medical websites, it’s overwhelming, but when stories like these are shared, it can make it easier to understand for new parents.
Ichthyosis Awareness Month: Casey and Chaz’s story: “We see Chaz as our one in a million and we are so lucky to have him in our life.”
Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton’s Syndrome and has just turned one.
I am so glad we met – Adam and I are travelling to Ballarat to spend a day with the family soon.
Meet Casey and Chaz.
Ichthyosis Awareness Month – Cora and Ashlynne’s story: ” At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin.”
I’ve been following Cora’s blog for a while – I admire how she writes about coming to terms with her daughter Ashlynne’s Confetti Ichthyosis. Life has been hard for them but they’ve chosen to celebrate, to work as a team – to dance in the rain, as Cora writes. The connections Cora made has ensured Ashlynne gained confidence and is comfortable in her skin – such an important trait for a 12 year old girl. And she has a mature sense of perspective, reminding her peers of what’s important in life. I love their story.
Ichthyosis Awareness Month – Atique’s story: “If you to start your life over knowing what you know today, what would you change?”
Ichthyosis Awareness Month – Mary’s story: “The relief of finding other people with similar skin is very liberating.”
I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn’t know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private message, offering gentle advice about my skin – the intravenous site to be specific. I had experienced awful pain around the cannula and Mary suggested an ice bag. I thanked her, but still I wondered how she knew so much about Ichthyosis. And so I asked her. She told me she’s in her mid 60s, a retired nurse, and she believed she might have Ichthyosis. We chatted a while longer, and soon after that, she went to the dermatologist for a diagnosis.