Jordan Flake shares her journey of discovering that both she and her sons have ichthyosis with confetti (IWC). Jordan describes the impact of living with a visible skin condition and passing it on to her kids, including worries about judgment from others and concerns about her children’s future. At the same time, the story emphasizes resilience, love, and the importance of community support.
Her story highlights the challenges many families face before receiving proper medical answers. Many people with rare skin disorders experience confusion, fear, and uncertainty while trying to understand what was happening and how to care for their child’s skin. However, Jordan’s dad, Terry also has IWC (autosomal dominant which has a 50% chance of passing it on to children), so they knew what to do. This story also reminds readers that people living with ichthyosis are much more than their skin condition.
By sharing their experience publicly, this family hopes to raise awareness, help others feel less alone, and encourage compassion and understanding for those living with rare skin disorders.
DATE: 06/20/2026
