read about my mission and consider donating just $2 a month and making a huge difference in the lives of many.
my name is Jennie and I started the harlequin diva foundation to help people that have ichthyosis and other skin disorders. My daughter Anna was born with harlequin ichthyosis
and I soon realized that very few things that are needed to help people with rare diseases are covered by insurance. I take small monthly donations and one time donations and I help people buy what they need. From micro silk bathes to cooling vests, air conditioners, and even lotion. If a person with ichthyosis needs help, we help them. I cannot change everything these kids may go through in their lives but I can make it easier for them. Help me, help children and adults all over the world get the supplies they need.
Hi! My name is Hunter Steinitz and I live in Pittsburgh, PA. I was born with Harlequin Ichthyosis in October of 1994. Throughout my whole life, I have helped contribute to medical research for my skin condition. There weren’t that many people with HI walking around back then, and much of the treatment back then was experimental and trial and error. Much of it still is. However, the HI world has
grown quite a bit since I was born and technology and treatments have grown with it. I didn’t have the luxury of a Microsilk tub, and I have only had the opportunity
to try it once. But even just that once, showed me that I have been doing skin care the hard way. Comparing how my skin felt getting out of the Microsilk to how it normally feels getting out of the bath is night and day! For the first time, my
ointments didn’t just sit on the surface of my skin, they got down deep. My skin felt open and flexible in a way that I can’t quite explain. Even on my best skin days, I don’t know that it has felt this good. And after that one bath in the Microsilk, my skin retained some of that openness for a few days after. My typical bath can take anywhere from 45 minutes to 2 hours depending on how much attention my skin needs. That allows the skin to soak and get as much moisture in there as possible. Even that though is often gone within a few minutes out of the water. I put on thick ointments to try and seal in that moisture, however, much of it sits on the surface and takes a while to soak in. I live in a beautiful old house in the city of Pittsburgh. Built in 1924, the house is nearing its centennial and much of the original pipes and systems remain. Putting in a Microsilk would require replacing those original copper pipes and likely some other work as well. Although this is an ambitious project, the end result would be a quality of life that I have never had. I’ve learned to take care of my skin but the process is long and at times complicated. Having this tool at my disposal would drastically improve my day to day life. It is not easy for me to ask for this kind of
thing, it doesn’t sit comfortably for me. I am incredibly grateful for any amount you can give to help! Thank you!
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The only managment for icthyosis right now is long bathes and constant use of aquaphor or other lotions.