So far this year Cristina Cosano has been in hospital several times, including in the intensive care unit (UCI). In total, she has spent six months and nine days in the Regional Hospital (formerly the Carlos Haya hospital) during 2019. The reason she is in hospital so often is that she suffers from mastocytosis, or non-clonal mast cell activation disorder, a very rare illness of autoimmune origin which causes very severe allergic reactions (at times her stomach swells more than if she were pregnant). In addition she has juvenile myoclonic epilepsy and suffers convulsions with epileptic crises.
Cristina, who is 33, developed the illness when she was 24. Since then, she has been coping with a hugely debilitating problem which means she has to be hospitalised every month or six weeks. Even though the treatments she has received have not had the desired effect, she is not giving in. One of her favourite words is resilience (the ability of human beings to adapt positively to adverse situations). As she says, "Rather than hope, what I have is positive resignation. When something is really wrong with you, you have to acknowledge its importance".
Her regular stays in hospital has brought her close to many of the people who look after her there, and she considers them part of her family. She is particularly grateful to the doctor who is handling her case, Iván Pérez de Pedro, a specialist in internal medicine at the Hospital Regional.
"I don't think anyone in the world could have done more to try to cure me," says Cristina, who was born in Puente Genil (Cordoba) but lives in Malaga with her husband and daughter. "I came to Malaga to study psychopedagogy and stayed," she says.
Cristina is a strong defender of the health system and the way she is treated at the Regional Hospital From her experience since being diagnosed with the illness, she says "I think people should feel proud of everyone who works in the health service: the porters, nursing auxiliaries, nurses, doctors etc. It's difficult to explain if you haven't experienced it. The doctors and rest of the staff who look after me have been absolutely fantastic. When something has happened to me, they have done absolutely everything possible to treat my illness".
Cristina's case is extremely unusual. "Cristina has a very rare illness. The prevalence of mastocytosis in the world ranges from one case per 20,000 people to one case in every 40,000," says Dr Pérez de Pedro. He explains that this autoimmune illness occurs when, for no apparent reason, the cells which produce allergic reactions are activated to such an extent that they can cause some extremely serious effects.
A very complicated case
Dr Pérez de Pedro says Cristina's case is one of the most refractory of those in Spain, because she doesn't respond well to the treatments. Also, because her condition doesn't improve with the medication she is given, many health service workers don't understand what is happening to her, says Dr Pérez de Pedro, who is the doctor who knows most about the illness and is often consulted by colleagues if they have doubts.
During the time she has been suffering from this illness, Cristina has been given various types of medication: steroids, immune suppressants, morphine, stomach and thyroid protectors etc. In March her ovaries and fallopian tubes were removed to try to improve her condition, and that has meant she cannot have more children. She has a daughter aged five and a half (Daniela), who brings her a great deal of joy.
"Daniela is like my mother; she looks after me and keeps an eye on me. When she was only three and I started having convulsions one day, she pressed the red button to get someone to come and attend to me. And when she was five she had to do it again when I had another epileptic crisis," she says. Cristina's husband, parents and sister are also a great help. "My family looks after me. For me, they are the most important thing in my life. They are so good for me," she says with a smile.
Due to her illness, Cristina had to give up work when she was 26 and is now highly dependent on others. She tries to enjoy the good moments to the full, because she knows that there will be bad ones to come and she won't be able to do anything to prevent them. As an example, she quotes a recent occasion when she was watching the Cirque du Soleil in Malaga, and six hours later she was in the Intensive Care Unit.
Although at present there is no cure for her illness, she is determined not to give in to it. Resilience is the key, she says.