By Natalie Williams • 21 November 2021 • 10:05
When eating is a Russian roulette
Food should give life not kill you. Unfortunately, Carlos a 32-year-old from Almeria has a rare illness that means when eating it is a Russian roulette.
At the age of 17, he moved to Madrid to pursue his career as a professional tennis player, but in 2012 his life changed forever. “I was a healthy, sporty and very active guy,” he confesses. Nine years ago he was diagnosed with a disease that is still unknown to many people, Eosinophilic Esophagitis, a condition that damages his oesophagus, preventing him from swallowing and even causing food impactions.
It all began when he choked on a piece of beef. “I thought it was a normal choking, but I had to go to the emergency room to have the piece of beef removed. From that moment on, the problems started”, says Carlos.
That was a life-changing moment for Carlos, as two months later he had another choking episode, but this time it was a piece of garfish. “After six times having the same problems, I was finally tested for food allergies,” confesses the Almeriense.
The allergy testing was a long and slow process, but after many tests, they finally found the name of the disease “An allergist here in Torrecardenas hospital was the one who diagnosed my illness”.
“Until recently I was allergic to fish, shellfish, veal, corn, rice, wheat and in the last analysis it came out that I no longer have an allergy to veal, fish or shellfish”, explains Carlos. So this disease affects all aspects of his life, especially when it comes to going to restaurants. “One of the biggest difficulties we have is being able to go to a bar to have a drink, as we have to be very attentive to the cross-contamination of any food, which is something that nobody can assure you that they don’t have”, the Carlos affirms.
The lockdown affected many people, the most affected were those who are ill, as in the case of Carlos: “In 2020 I started with recurrent episodes, I was choking on everything, I couldn’t even swallow my own saliva, I couldn’t eat anything it was a Russian roulette so I have been feeding myself on porridge for six months, I have lost 20 kilos that I can’t recover right now because I’m afraid to eat, it’s like playing Russian roulette every time something goes in my mouth”, he says.
Carlos is currently taking a treatment, corticoids. However, there is one that is distributed in different European countries but “in Spain, it has been approved, but as an orphan drug, that is to say, the Social Security does not pay for it”, confirms the sufferer of this disease to La Voz.
Even though the disease is not well known, “there are 40,000 of us with this disease”, says Carlos.
There is an association to give visibility, to support those affected and now has a project underway to find a new treatment. “The Spanish Eosinophilic Esophagitis Association has set up a crowdfunding campaign to raise money so that a doctor who is internationally renowned in the field of the disease can carry out research and conduct a clinical trial for a new treatment,” says Carlos.
Right now, Carlos is feeling better and is eager to fight. “It’s not about me, it’s about fighting for everyone. The aim is to give visibility to this disease in order to improve our quality of life,” he told LA VOZ.
“Eating is living, which is why this disease has affected me in all aspects”, he confesses. At the moment, “I am encouraged because I trust in Spanish research and I know that this new treatment is going to be successful,” Carlos said optimistically.
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