FRESNO, Calif. – A young woman from Fresno, California, is speaking out about her “invisible illness” in hopes of helping others with chronic illnesses.
Tessa Hansen-Smith suffers from the rare condition aquagenic urticaria, which means she is allergic to water.
When she was about 8 years old, she developed a “water allergy” that got worse over the years.
“I came out of the shower and had huge welts on my skin and my scalp was bleeding after showering,” Hansen-Smith said. “So the first thing we did was, ‘Okay, let’s take away your shampoos, let’s take away your conditioner, and let’s take away all the soaps that you use.'”
As a little girl, she played, swam, bathed, and drank a lot of water like any other child until she began experiencing mysterious symptoms.
Now water causes itching, rashes and hives on her skin.
When she drinks it, she may experience a burning sensation in her throat and body.
Therefore, she mainly drinks milk because the water content is buffered by proteins, fats and sugar.
Years of testing by many specialists finally led to the conclusion of her closest doctor, her mother.
“As a mother, I feel a little guilty because I didn’t see when she got out of the shower that she had hives and found out much sooner that it was a water problem,” said Dr. Karen Hansen-Smith, Tessa’s mother.
As a family doctor, Tessa’s mother has seen many rare diseases, but watching her own daughter suffer is even harder.
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“It’s heartbreaking. I still have my daughter; she’s 25. She’s not living the life she wanted to live,” Karen said.
Still, Tessa’s positive attitude remains unwavering, thanks to the support of family and friends.
“That really makes all the difference, having people around you who believe you and are helpful,” she said.
Water isn’t the only cause of Tessa’s pain, as she said, people’s skepticism also hurts.
“When I told people about it in college, people would intentionally try to splash me with water or I would throw ice cubes at myself,” Tessa said.
Despite these incidents, Tessa was successful in college.
After graduating from Clovis Unified’s Buchanan High School, she attended UC Davis.
At Davis, she worked two jobs while juggling a busy schedule, but then her health began to decline and when the pandemic hit, her weakened immune system made her college life too risky.
So she moved back home.
She goes for walks but needs to avoid sweating too much, so she spends much of her days indoors, where she works on art, plays with her cats, and reads.
“In the summer when people go to the beach, people have pool parties and try to escape the heat as best they can and those are things that I can’t take part in and 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 to the colon is blocked, leading to serious illness.
She is still recovering with physical therapy.
Instead of turning inward after this setback, Tessa is sharing her story to help others with rare and often misunderstood conditions.
She is part of a book called “Chronically Empowered” and even appeared on the Dr. Oz show on.
“I always think about how much easier and how much better life would have been if this hadn’t happened to me, but because I know I can’t really change that, I just focus on how I can help other people “Things that are going through similar things,” Tessa said.
Tessa’s story went viral on social media and she takes to her Instagram page Life without water to connect with others with rare diseases and offer understanding and support.
“Being able to meet so many people and talk to so many people from so many different walks of life really brings me joy and gives me a sense of purpose with the disease,” Tessa said.
Tessa also tries to help her parents, who take time off from work to care for her.
Her recent hospitalization cost $100,000, most of which, except for about $10,000, was covered by insurance.
Karen said Tessa wanted to raise the money herself to contribute to the family as she was physically unable to work at the moment.
“Their biggest concern is to make people feel better. That’s what I love about her,” Karen said.
A friend urged Tessa to start one GoFundMe to cover medical costs.
On the page she thanks the donors and at the same time provides information about aquagenic urticaria.
“I hope I can go back to school, I hope I can find a job again, I hope I can find a sense of normality in life again,” Tessa said.
Tessa has an older sister who is not allergic to water.
It is estimated that only 100 to 250 people worldwide suffer from aquagenic urticaria.
There is no cure for it and Tessa and her parents are meeting with doctors in the area to look for new allergy treatments.
She is currently taking antihistamines to relieve rashes, hives and itching from contact with water.
She hopes to continue pursuing a nursing degree and said that as a nurse, she would approach patients with compassion and, most importantly, trust in their symptoms.