St Albans woman speaks out about debilitating water allergy
PUBLISHED: 11:22 14 September 2018 | UPDATED: 11:22 14 September 2018
A women who is allergic to water is reaching out to the St Albans community to raise awareness of the debilitating condition.
Although Wheathamsted resident Lindsey Coubray has always sneezed while showering, it was not until age 17 that she understood the full gravity of her H2O sensitivity.
She had developed a condition called postural tachycardia syndrome (PoTs) which causes her heart to race just for standing up.
Just putting a pillow case on can send her heart to 175 beats per minute and the illness, which mostly affects women ages 15 to 50, causes dizziness, fainting, palpitations, shaking, sweating, weakness, fatigue, headaches, nausea, chest pain, and insomnia.
On top of all this, PoTs exacerbated her water allergy - a condition called aquagenic urticaria which only affects one in 230 million people.
Every time the 19-year-old goes swimming, has a shower, is caught in the rain, or drinks water she breaks out in intensely itchy hives all over her body, her eyes burn and become bloodshot, and her nose runs.
Lindsey even has a reaction to her own tears when she cries and her own sweat in hot weather.
She said: “When I was diagnosed I had reached the point where I was expecting it as it had become obvious what was causing my body to react.
“However, as the condition has worsened it has become difficult to come to terms with the impact that it has on my life. Having PoTS can often leave me feeling tired and low, so coming out in an allergic reaction to my own tears can feel like the final straw.”
It is unclear what causes aquagenic urticaria and Lindsey takes daily antihistamines to manage the symptoms.
However, treatments for her two conditions often clash - for example PoTs patients are urged to drink lots of water but this is a problem - Lindsey’s mouth breaks out in a burning rash, she feels nauseous, and her tongue becomes painful - so she has to drink juice instead.
In order to keep active PoTs patients are advised to swim, but this is obviously not feasible for Lindsey.
She said the condition is relatively unknown: “There is often a sense of disbelief, followed by questioning how this is even possible.
“People often wonder how I can be allergic to something that makes up 60 per cent of my body.
“There’s a lot of curiosity about it and people often ask how I manage to drink or to wash.
“I don’t think that sometimes people realise what I go through and how frustrating it can be to learn how to manage the symptoms.”
There is no guarantee that the allergy will ever disappear and Lindsey may have the condition her whole life.
However, she finds solace in a global Instragram community of other sufferers at @aquagenic.urticaria - there are about 300 people following the account.
She added: “I felt as though I was a bit lost, but the group has helped to answer many of my questions and talking to people with the same condition has been really reassuring.
“They have also helped me to find ways to deal with symptoms.
“My family and friends have been very supportive, both in cheering me up when I’m having a bad day and in making small changes that can help, such a buying a range of drinks to find those which cause the least reaction.”
Lindsey would like to both raise awareness of the condition and direct anyone who also suffers with it to the Instragram group.
“Staying positive, speaking to other people in the same situation as me and sharing/supporting others through my own online health page means that I am able to manage this condition and feel happy,” Lindsey said.
Aquagenic urticaria is very rare, and in 2011 it was reported that there are fewer than 100 cases in medical literature.
The more people become aware of the condition, Lindsey hopes more treatment options will be developed. She has a tattoo near her collar bone of a water drop and an umbrella to raise awareness of the condition.
Lindsey also has her own Instragram page, where she posts about her experiences with PoTs and aquagenic urticaria. Visit it at @chronically.linds
Do you also have the condition? Get in contact at firstname.lastname@example.org