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In this informative capsule, Teresa Llull, president of the Respiralia Foundation talks about her experience Cystic Fibrosis and the associative movement.
A difficult start
In 1989, Teresa received the news of her grandson’s diagnosis, so she decided to approach the Association that had been created a few months before, thanks to families who, like her, had very little information about Cystic Fibrosis.
Thanks to the great reception from these families, Teresa decided to get involved in the Association by helping in any way she could.
New services for children with Cystic Fibrosis
They had heard that swimming was very good for draining mucus, so Teresa organized swimming courses run by the Association and promoted close collaboration with the pediatrics and pneumology team of the Son Dureta Hospital (now Son Espases).
Improving quality of life as a goal
Having to be admitted to the hospital every three months for intravenous antibiotic treatment meant that the children missed many days of school and, above all, their joy.
Teresa sought a solution to this problem, proposing home treatment through a project that proved to be much cheaper and more beneficial for families’ morale. With Baxter pumps, this home treatment allowed children with CF to go to school, even with the IV in, thus facilitating greater social integration and greater comfort for families.
Major achievements at the association level
In addition to watching over the quality of life of the group, Teresa assumed the positions of member, treasurer and president of the Association and also secretary of the Spanish Federation of Cystic Fibrosis.
Her impulse as a directive led her to achieve the National Cystic Fibrosis Day, the e-Flow Rapid and the verification of Cystic Fibrosis in the heel test in the Balearic Islands and the recognition of the public administration to the effort that was being made for this group.
A message of encouragement to families
Teresa encourages all members to contribute their own value, whether it be computer skills, volunteering at events, or finding resources. Although we have come a long way, there is still a lot to do, as there are still people who do not have the latest generation of modulator drugs and resources are needed to provide them with good care.
#TogetheragainstCF
