President of the Association of Marfan syndrome, Nicolas Beltran says it has dropped thanks to the units of 12 October and Vall d’Hebron.
On Friday 28 October marked the Day of people affected by Marfan syndrome. The Minister of Health, Leire Pajin, was responsible for opening the event, held in the auditorium of the Area Address ONCE in Alicante. Likewise, the Marfan Syndrome Association (SIMA), I called his Art Contest Simart, Niccolo Paganini. The association celebrated the birth of this outstanding violinist, guitarist and composer Genoese, born on October 27, 1782 and who suffered from Marfan syndrome, with a series of events related to this rare disease and the association with SIMA.
13,000 affected by Marfan syndrome in Spain
Mortality in patients with Marfan syndrome in Spain “has fallen by units of the Hospital on October 12 and the Vall d’Hebron “Europa Press said the President of the Association of Marfan syndrome, Nicolas Beltran, who also recommended”operated in one of the two. The patient also stated that this rare disease before mortality data were a scandal Because the surgery did not get satisfactory results. He added that this condition occurs in an affected ongoing damage connective tissue, with cardiovascular complications the most dangerous. Currently, this condition affects 13,000 people in Spain.
Rare disease that affects two of every 10,000 people
SIMA President described the disease in which patients are higher than average, have long fingers and a sunken chest or out. In addition, vision problems are common and can produce retinal detachments. This condition affects both men and women. And suffer two of every 10,000 people. It also causes dental problems and endocarditis prophylaxis is available on the Channel Marfan, Website for information about Marfan syndrome.
Marfan syndrome: death from aortic aneurysm
However, the hobbyhorse of patients with Marfan syndrome is the fight against aortic aneurysm. In this sense, Nicolas Beltran added that this condition does not reduce life expectancy unless there is an aortic aneurysm, which causes breakage of the same and subsequently death. Following this warning, ensuring that Beltran reassured if diagnosed early there is no risk.
New and promising treatment from Marfan syndrome
Until now, treatment of Marfan disease is based on beta-blockers, so slow expansion of the aorta Said association president. However, the patient sample very hopeful With a clinical study whose outcome will be revealed in 2012 with a drug tested in mice with aortic aneurysm and the recovered.
Alteration in the gene FBN1 in most cases
The Marfan syndrome occurs in 85% of cases by an alteration in the gene FBN1 While the remaining cases arise unknown way during pregnancy of the mother Beltran said. For the president of SIMA, this is a disease unknown By the population and even by the courts to judge the degree of disability of patients. Beltran said that the manifestations of the condition are recognized as a disability, however, claimed that patients with no complications are also classified as invalid. The disease does not affect the day to day, and you are reduced to a series of jobs. You can not lift much weight, and make great efforts because the heart undergoes much, Beltran said.
Abraham Lincoln, affected by the Marfan Evil
Among the celebrities who have had the Marfan syndrome figure Abraham Lincoln, Sixteenth President of the United States and the first for the Republican Party. In the current art scene, another affected with Marfan syndrome is the actor of the film Rec 2, Javier Botet.
Leire Pajin Official Ceremony opened in Alicante
The Minister of Health, Leire Pajin, presided over the celebration of people affected by Marfan syndrome, held in the territorial headquarters in Alicante ONCE. The event was held on October 28 to coincide with the week that marks the birth of musical genius, Niccolo Paganini, Suffering from Marfan disease. To pay homage to Paganini, the association SIMA held a concert in his honor and I called his Art Contest Simart, Niccolo Paganini business personalities and disseminators of the disease, as a creative, dynamic and inspiring creativity, to give the Interchange of artistic experiences to raise awareness from the positive aspects of disability.
More research is needed on rare diseases
This activity is part of the awareness campaign each year develop the partnership to advance the knowledge of Marfan syndrome and disclose the existence of SIMA. Together with the Minister of Health, attended the event jurors, representatives of various partner organizations and representatives of the City of Alicante. The president of the association recognized the vindictive nature of SIMA as research is needed on the RD. However, was satisfied with the level of studies in the Marfan syndrome because is one of the most investigated. The Association of Marfan syndrome has assigned more than 2,000 patients since 2009 and has had no late than sorry.