You heard it in No Te Duermas
This is how Rosa Arias, coordinator of the Rare Diseases Program of La Matanza, expressed herself about her work on the subject and the daily work she does.
At the beginning of the interview, she stated that “the function of the program is to provide registration, guidance, referral and follow-up of these cases with the patients and the municipality of La Matanza.”
In line with the above, she defined: “It all started with my daughter’s illness, which is rare, and today we have close to 8,000 rare diseases in the country. In La Matanza many diseases go unnoticed.”
“These diseases are not usually found in first-level hospitals, but in third-level high-complexity hospitals. The detection of this type of disease takes years to be able to be identified,” Arias reflected in detail.
The perseverance and struggle of a mother for her daughter and for many other people
In the continuation of her explanation, she revealed the journey with her daughter to find answers to her illness: “The perseverance and struggle of a mother for her daughter and for many other people who suffer from rare diseases bore fruit. I went to different hospitals until one of them told me that my daughter suffered from Marfan Syndrome.”
“We managed to travel to the United States twice to have a personalized diagnosis and thanks to that today my daughter can walk, she is a fairly normal person, who takes expensive medications and this occurs in 90 percent of patients with rare diseases,” completed the coordinator of the Rare Diseases Program of La Matanza.
“It is not only medications, but also supplies, operations…”
In the final part of the talk she focused on fundamental issues of rare diseases: “It is not only medications, but also supplies, operations, different issues of this type of diseases. This year I lost five patients because of not being able to cover all the needs, young people from La Matanza, caused by the policies of the national government.
At this time we do not have the resources from the National State to access expensive medicines. It is different from the Municipality, humanly there is help, but not all the necessary resources for these diseases,” concluded the interviewee.
You can find Rosa Arias at Yrigoyen 2562, second floor, San Justo, from 7 to 13 from Monday to Friday to be able to get advice on the subject or for any questions on the matter.
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