Meet Hunter Steinitz, aged 34. Hunter suffers from an incredibly rare condition known as Harlequin Ichthyosis. A condition so unusual that when she was born many of the attending doctors simply didn’t know what had happened, or what she was suffering from.
It is estimated that only 20 people in the US suffer from Harlequin Ichthyosis, and only 100 worldwide. This is because it is extremely rare for people born with any form of Ichthyosis to survive past infancy, and in fact Hunter is the oldest woman with the condition still alive in America. When she was born there were just five people in the US who had it and had survived their early years.
It’s not entirely clear how the genetic components of Harlequin Ichthyosis result in the symptoms we see, but we know that like all forms of Ichthyosis it results in the body growing too much skin. In Harlequin Ichthyosis this means skin that is cracked, often bleeding, and extremely dry.
India's 1st "Harlequin Ichthyosis Baby" born & died soon after in Nagpur; RIP (rarest genetic disorder with no skin) pic.twitter.com/LWK1nmLYOp— #CONgressMuktBharat (@sagenaradamuni) June 21, 2016
Eyelids can be everted, or missing entirely, lips become pulled back by the severity of the dry skin, and it’s common for babies with it to be born bleeding from their skin due to the trauma of birth. While death is common during early childhood, the condition can still be treated using antibiotics, moisturisers, and other topical creams.
These are just some of the problems faced by Hunter, who has worked hard her entire life to raise awareness of Ichthyosis alongside others who suffer similar conditions. Advocacy has been a huge part of her life:
“The way I see it, God gave me a story to tell,” Hunter said, “and He gave me the tools to tell it.”
As part of a recent effort to raise awareness Hunter has worked with others in the group to create a performance to help others understand her condition. This includes singing and dancing, and even a short question and answer forum where Hunter can address questions regarding her condition, and her life.
Currently Hunter is fielding requests from six different cities asking her to perform:
23-year-old Hunter Steinitz is believed to be the oldest female in the US living with rare genetic skin condition Harlequin ichthyosis. Story and video: https://t.co/l8gfssKzEn pic.twitter.com/iSntSk7NDv— Andrew Rush (@andrewrush) May 11, 2018
“I wish this was my full-time job,” she said. “Because I think this is by far the most wonderful thing I’ve ever done with my talent, my time and my resources.”
At the end of her performance Hunter plays herself and ends her monologue by encouraging us to be open and honest about our questions, but to still be sensitive about how our actions affect others.
“I don’t care if you stare at me. I do care if you look away.”
While Hunter attributes a lot of her success to her loving parents who have worked hard alongside her to help her achieve her dreams, others with the same condition have not been so lucky.
#فضفضة_طبيب #لست_وحدك— Naif Alhazmi (@magnetic444) December 4, 2017
This rare condition has been given several names like harlequin ichthyosis, or collodion baby - it describes a continual and widespread scaling of the skin. pic.twitter.com/otTcYEJlSG
In January 2017 a baby born with the condition in India was rejected by his mother, who refused to breastfeed or care for him in anyway. You can read more about it on The Sun here.