Water is essential to human life, and most people take for granted bathing in it, drinking it and cooking with it every day. For one little girl, however, water is dangerous.
Ivy Lynn Angerman of Hastings, Minnesota, is 18 months old, and has been diagnosed aquagenic urticaria, a rare condition that makes her severely allergic to water. When the toddler’s skin comes into contact with water—even a small amount, or for a short period of time—her skin breaks out into painful rashes, hives and blisters.
Ivy’s condition makes everyday activities like taking a bath, swimming in a pool or going out in the rain extremely difficult or near impossible. The little girl even experiences a reaction from her own tears and sweat.
Her reactions last from 15 minutes to an hour, and are lessened when she takes an antihistamine. However, she is becoming immune to their effects, so they are used sparingly.
For now, she is able to drink water without incident, as it seems her skin is the most sensitive to contact.
Understandably, Ivy’s condition is distressing for her parents.
“She used to love the bath and now she’s screaming bloody murder when we have to wash her,” Ivy’s mom, Brittany Angerman, told People. “It feels like a third-degree burn. She runs around screaming that she’s hot. It’s so hard to watch as a mother.”
Aquagenic urticaria is extremely rare. Douglas L. Powell, clinical professor in dermatology at the University of Utah Hospital, told The Cut there are less than 100 cases reported in medical literature. Because it is so rare, it also remains mysterious. Some researchers believe the reaction is actually caused by a hypersensitivity to trace chemicals in water.
However, sufferers still break out when exposed to water that is chemical-free. It appears to be more common in women and often starts during puberty. There is no cure.
To manage reactions, a number of treatments have been employed with varying degrees of success, including Propranolol, UVB light treatments, Stanozolol and creams that serve as a barrier between the skin and water.
In 2015, 18-year-old college student Alexandra Allen spoke to The Cut about living with the condition. Allen described the many strategies she employs to reduce her contact with water, such as using hand sanitizer instead of washing her hands, and taking a cold, two-minute shower just once weekly. She also exercises at night to keep sweat at a minimum. She keeps an EpiPen on hand for when she has severe reactions.
Meanwhile, while Ivy is only affected when her skin comes into contact with water, her parents worry that it will eventually affect her internally, making it impossible for her to drink water. The family has set up a GoFundMe page for help in raising money that would allow them to move into a home with a purified water system and air conditioning, which would make it easier to manage Ivy’s condition.
Here’s hoping that a cure is found soon for everyone suffering from this difficult condition!
Little Boy With Rare Disease Inspires Others With Positivity
Meet Giovanni. He’s a 10-year-old boy living with Schwartz Jampel Syndrome, a rare genetic disorder that causes abnormalities in muscle and bone development and can affect growth. Patients suffer with stiff muscles and compromised joints that can make crawling, sitting and walking difficult. The condition is so rare that only approximately 85 cases have been reported.
Despite the hardships he’s faced so far in his short decade of life, Giovanni retains a surprising and inspiring positive attitude, which is documented through his social media accounts. I mean, look at this little guy:
— Giovanni the Philly Sports Podcaster (@realsjsgiovanni) January 8, 2018
Check out this heartwarming video from A Plus and Chicken Soup for the Soul that shows a bit of Giovanni’s approach to life that makes him so special: