California woman with water allergy describes living with rare condition: 'Really isolating'
FRESNO, Calif. -- A young Fresno, California woman is opening up about her "invisible illness" in hopes of helping others with chronic conditions.
Tessa Hansen-Smith has the rare condition of Aquagenic Urticaria, meaning she's allergic to water.
She developed the "water allergy" when she was around 8 years old, and it has worsened over the years.
"I would come out of showers and have huge welts on my skin, and my scalp would be bleeding after showering," Hansen-Smith said. "So, the first things we kind of did was, 'OK, let's take away your shampoos, take away your conditioner, take away any soaps you're using.'"
As a little girl, she played, swam, took baths and drank lots of water like any other kid until she began developing mysterious symptoms.
Now, water causes itching, rashes and hives on her skin.
If she drinks it, she can feel a burning sensation in her throat and body.
So, she drinks mostly milk because the water content is buffered by proteins, fats and sugars.
Years of testing by many specialists finally led to a conclusion by her closest doctor, her mother.
"I feel a little guilty as a mom for not having seen when she would get out of the shower that she had hives and figuring it out way earlier that it was a water issue," said Dr. Karen Hansen-Smith, Tessa's mom.
As a family medicine physician, Tessa's mom has seen many rare illnesses, but watching her own daughter suffer is even more difficult.
"It is heartbreaking. I still have my daughter; she's 25. She's not living the life she wanted to live," Karen said.
Yet, Tessa's positive perspective is unshakable, which she credits to the support of family and friends.
"That seriously makes all the difference, having people around you that do believe you and are helpful," she said.
Water isn't the only cause of Tessa's pain, as she said people's skepticism also stings.
"When I did tell people about it in college, I would have people try to purposely splash water on me, or I would have people throw ice cubes at me," Tessa said.
Despite those incidents, Tessa thrived in college.
She attended UC Davis after graduating from Clovis Unified's Buchanan High School.
At Davis, she worked two jobs while juggling a full schedule of classes, but then her health began to decline, and, when the pandemic hit, college life became too risky with her compromised immune system.
So, she moved back home.
She takes walks but must avoid sweating too much, so she spends much of her days indoors, working on art, playing with her cats and reading.
"In the summertime, when people are going to the beach, people are having pool parties, and trying to escape the heat the best they can, and those are things I can't participate in and can't enjoy, so it can be really isolating," Tessa said.
Then, her health took a drastic turn.
Tessa spent 12 days at Community Regional Medical Center after becoming so dehydrated that she developed ischemic colitis, in which blood flow is blocked to the colon, resulting in serious illness.
She's still recovering with physical therapy.
Instead of turning inward after that setback, Tessa is pouring out her story to help others with rare and often misunderstood conditions.
She's part of a book entitled "Chronically Empowered" and even appeared on the Dr. Oz show.
"I always think about how much easier and how much better life would have been if this didn't happen to me, but because I know I can't really change that, I just focus on how I can help other people going through similar things," Tessa said.
Tessa's story has gone viral on social media, and she uses her Instagram page Living Waterless to connect with others with rare conditions, offering understanding and support.
"Having been able to meet so many people and getting to talk to so many people from so many different walks of life really does give me a lot of joy and gives me a sense of purpose with the condition," Tessa said.
Tessa also tries to help her parents, who take time away from their jobs to care for her.
Her recent hospital stay cost $100,000, most of which was covered by insurance except for about $10,000.
Karen said Tessa wants to raise the money herself to contribute to the family since, for now, she cannot physically hold a job.
"Her biggest thing is trying to make people feel better. I love that about her," Karen said.
A friend urged Tessa to establish a GoFundMe to help cover the medical costs.
She thanks donors on the page while also providing information on Aquagenic Urticaria.
"I hope that I can go back to school again, I hope that I can get a job again, I hope that I can find a sense of normalcy in life again," Tessa said.
Tessa has an older sister who does not have a water allergy.
It's estimated only 100 to 250 people have Aquagenic Urticaria worldwide.
There is no cure for it, and Tessa and her parents meet with doctors in the area to seek advancing allergy treatments.
For now, she takes antihistamines to alleviate the rashes, hives and itching from contact with water.
She hopes to continue pursuing a nursing degree and said, as a nurse, she would approach patients with compassion and, most of all, belief in their symptoms.
