“One day they tell you that you are one of those people who has a rare, incurable disease without treatment, and all of a sudden, it flips you 180 degrees. ” Cristina de Ves is only 35 years old. This palmesana, in love with athletics from her childhood, changed her life three years ago: “You have the disease of Gerstmann Straüssler Scheinker “, the doctor told me when I was pregnant:” Life expectancy is around five years “.
“The blow was extremely hard and you consider absolutely everything, including having the girl“But he better start the story from the beginning,” he says with spectacular integrity.
Cristina de Ves was born in Palma in 1985. At a very young age she went to live in Inca where the practice of Athletics school. “I started to participate in popular races and I realized that I was not doing anything wrong, that’s how I got federated and entered the Inca Athletics Club,” he recalls. “I participated in several Autonomous and National Championships and the truth is that I really enjoyed it, But there were also many hours that he had to dedicate to all this. At the age of 21, after finishing my degree, my performance in the sport was no longer improving and I made the decision to park it professionallyevokes.
Despite taking that complicated step, Cristina acknowledges that her whole life has been linked to sports: “Maybe I wasn’t exercising as I used to, but I kept running on my own, setting up training groups with women, participating in popular races and practicing crossfit during the last years “. It was precisely in this sport modality where he began to have” somewhat strange sensations “.
“One day I noticed that I started to have pain in an area of my hip stumble while running. I felt somewhat awkward, when I had never been, but they were sensations that came and went, so I didn’t give it much importance either, “he recalls. Cristina participated in her last race on April 10, 2016, in the 10k mode of the ‘261 Women’s Marathon’. “It took me horrors to get to the finish lineBut I got it accompanied by two friends and it was a moment that I will never forget, “she says.
But suddenly everything fell apart three years ago now. 29 weeks pregnant, she was diagnosed with what she really had. “I never thought that something like this could happen to me. A thousand things went through my head and I suffered a brutal anxiety crisis“, recognize.
Gerstmann Sträussler Scheinker syndrome is a prion disease that pleads to lack of coordination followed by slow deterioration of mental function. Usually the first symptoms are clumsiness and instability when walking. Speech is impaired and usually affects the muscles that control breathing and cough, increasing the risk of pneumonia, which is the most common cause of death.
“The first thing they did as soon as I was diagnosed with the disease was to do a genetic test on my parents and the results came back negative. It was ruled out that it was an inheritance mutation. A thousand questions crossed my mind: What if my daughter also had it? “Despite everything, my husband and I decided to have it, even knowing the risk that this entailed. They were very hard times, until at 34 weeks of gestation we were able to verify that his DNA did not undergo any genetic alteration. I felt immense happiness, “he recalls.
Cristina acknowledges that the evolution of the disease is now progressing “by leaps and bounds” and “even knowing that there is no cure or treatment,” the only thing he feels “is a crazy desire to live.” “I notice a clear deterioration in motor functions: not long ago I started walking with a cane, I soon needed two and now I cannot move without a walker,” he admits.
His dream and his intentions are now set to make visible his ailment and that of all those people who suffer from rare diseases. “I am the only person in all Spain afflicted by Gerstmann. Studies are being done, work is being done, but politicians also need to help and dedicate much more resources to research, “he says.
Through the OsOigo platformCristina has managed to take her story to the Parliament of the Balearic Islands, where she was received just a few days ago to present her case and publicize her problems: “They all promised me that they were going to help me make visible rare diseases. They showed me their intentions that it could be a link of union and I am very grateful for the gesture they had with me. “
“I want all those people who suffer from rare diseases they feel supported and we help each other to lead a better quality of life. I really want to go ahead and tell all those healthy people or people with a rare disease not to miss anything in life, to live their own story to the best of their ability and never forget to take advantage of every second of their life in be happy “, ditch.