Member stories

Our son was born 2 years ago with harlequin ichthyosis. We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion. We had an exceptionally fantastic NICU team who…

My name is Paige and I am 20 years old. This is my story. Ever since I was born the doctors were adamant that I had severe eczema despite my bright red blistering dry skin.…

“Have you spent too long in the sun?”…. If I had a pound for every time I got asked that question I would be able to buy a small island in the sun. Having Lamellar…

My name is Chantell. I live in a small community in Fort Nelson B.C, not a very big town for sure but the people are friendly and we call it our home. 17 years ago…

October 2012, 6 weeks to go until my due date. My fiancé Steve set off on a business trip to Washington DC. If it had been any closer he wouldn’t have gone, but a whole…

I am now 51 years old….just. I have had ichthyosis all my life. It is part of me and I live with it. It makes me unique. Sometimes it frightens me, because I and others…

I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks. I am 46 years old man and have suffered since birth on my legs, arms and trunk; the worst by far…