Roquetas de Mar (Almería), (EFE).- Carlos Solas is 33 years old and at 19 he was diagnosed with eosinophilic esophagitis, a chronic disease of the immune system in which a type of white blood cell (eosinophils) accumulates in the esophagus, something that has marked his life and that can now change with the approval of the financing of the first medicine in Spain against this pathology.
“I was a semi-professional tennis player in junior days. When I finished my role as a player, I set up a club with my brother, but I have been out for many years due to all the diseases I suffer from, although the most characteristic one I suffer from, with a 100% reliable diagnosis, is esophagitis”, says Carlos Solas. in an interview with EFE.
“The main symptom is dysphagia, difficulty swallowing food. It is the main cause of dysphagia in the world in young patients. I started choking in 2009, but I was not diagnosed with the disease until 2014, almost 2015, ”she explains.
It is a “rare” disease, with a prevalence of 6.4 people per 100,000 inhabitants, which translates into some 40,000 patients throughout the country. “In many areas of Spain the diagnosis is coming forward, but in other areas they continue as they have been for years due to ignorance of the disease,” he laments.
Carlos Solas tests a biological treatment
Carlos Solas points out that until now there were three types of treatment. The first of them consisting of the so-called food exclusion diets, “because at first it was thought that food allergies were the origin of this disease.” “I spent 12 years without eating rice, corn, wheat, fish, shellfish, beef… Now I am reintroducing food,” he adds.
For Carlos Solas, this treatment, like the rest, has not been useful. He also tried a “proton pump inhibitor”, and also went through corticosteroids, ‘Viscose Budesonide’. “It is a magisterial formula and each pharmacy makes its syrup, some make it very liquid, others very thick… There is no pattern”, he maintains.
At the moment, he is testing a biological treatment “that was used in Spain for very severe atopic dermatitis.” “In the United States a couple of months ago it was approved for use with patients over 12 years of age. It is an off-guide medication and it is causing me side effects. I hope it works. In May I have an endoscopy and if it hasn’t worked, now I have another alternative, called ‘Jorveza’”, he recounts.
This is ‘Jorveza’ (budesonide orodispersible tablets), from the Dr. Falk laboratory, whose financing has been approved by the Interministerial Commission on Drug Prices (CIPM) this week.
The administration does not support
Carlos Solas regrets, on the other hand, that the administration and the health system “do not accompany patients with esophagitis at all.”
“They follow me in a hospital in Madrid. Here I felt a hospitable abandonment. It is true that the pandemic coincided and many diseases were forgotten, but this is chronic and must be monitored frequently. If the medication does not work for you, the esophagus deteriorates ”, she says.
“I had such a bad time because I lost 19 kilos due to this disease and I spent six months eating porridge. Instead of giving up and stagnating, what I decided was to put my backpack on my back and be the visible face of this disease at a national level and appear in the media, so that doctors realize that this disease causes many problems in the quality of life”, affirms Carlos Solas.
Nor does he understand why, for example, in Madrid they stopped him at the airport for half an hour just for taking his medicines in a fridge. “They said they had to analyze what it was, and they had to keep cool. They said it could be an explosive. If there is no accompaniment to the chronically ill by the administrations, we are not going to get anywhere”.
He also remembers how difficult it was in his case to reach a diagnosis. “I lived for three days with a piece of beef in my esophagus. They didn’t do an endoscopy, they told me I could drink water. I was not evaluated by a digestive specialist, he was left there until I choked again ”, he assures.
In addition, Solas considers that there should be “multidisciplinary” care and work. “I have phagophobia, fear of food.
fear of swallowing
I don’t eat meat, if it’s not cooked chicken that crumbles. When swallowing it scares me, but the patients are not accompanied by a psychologist. When it’s time to eat it’s a battle because you’re thinking that you might choke”, confesses Carlos Solas.
For this reason, he appreciates that having won this “so long” battle to obtain financing for ‘Jorveza’, in which he himself participated when he was a delegate in Andalusia of the Spanish Association of Eosinophilic Esophagitis (AEDESEO), is the best news that he could have receive.
“I have even gone to the Ombudsman and I began to fight in 2019, appearing in the media. I got a meeting in the Congress of Deputies and got to write to the President of the Government. I thank those deputies, because without them, our fight would not have been useful ”, he concludes. EFE