Tom Service, [UK] Guardian music blogger, disputes Poland’s refusal to allow the heart of Frederic Chopin (left) to be tested for cystic fibrosis.

As the scientists say, ‘Is it not right to make an attempt to prove to many suffering people that many things count in life much more than a weak physical body, and they are not predestined to vanish without leaving something that will influence, inspire and enrich generations to come?’

…[Chopin's] music, instead of merely reflecting his sickliness or the way he succumbed to his physical frailty, is heroic: not just in the way he created a whole new approach to playing and composing for the piano, but also because his creativity transcended the hardships of his life. If it was cystic fibrosis rather than TB, then that just makes Chopin’s music the more astonishing. For sure, it won’t change the musical significance of his output, but I think we ought to know: let the scientists have their sample, I say.

Earlier post here.

(Image from Schick’s portrait, Hulton archive, in the [UK] Guardian)

From Time/Associated Press, the [UK] Guardian:

The Polish government has denied requests from scientists to perform DNA tests on Chopin’s heart to determine whether the composer actually died from complications associated with cystic fibrosis, not tuberculosis.

Chopin’s heart has been preserved in a jar of alcohol inside a pillar at Warsaw’s Holy Cross Church since 1849, except when removed for safekeeping during World War II.

Cystic fibrosis was not discovered until decades after Chopin died at age 39, and scientists believe the heart could validate historical evidence suggesting that many of his symptoms match the condition, including respiratory infections, recurrent fevers, delayed puberty and infertility.

A government spokeswoman said the research was not “justified by the potential knowledge to be gained.”

(more…)

From ABC News, more reaction to the story about the parents who used new technology to screen their embryos for one without the BRCA1 gene.

Dr. Sherman J. Silber, director of the Infertility Center of St. Louis at St. Luke’s Hospital, says doctors have been prescreening fertilized embryos since 1990, when people first started trying to avoid having children with cystic fibrosis.

A similar phenomenon has taken place, Silber noted, in families that have had autistic children and would like to avoid having another.

“For autism already in couples that have children, they’re requesting [pre-implantation diagnosis] with sex selection, because, obviously, it’s so much more common in boys than in girls,” Silber said. “There are couples that have had several children with autism … that have been requesting sex selection just to have only females.”

Earlier stories here and here.

(Photo from Infertility Center of St. Louis at St. Luke’s Hospital)

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• Man with autism found alive after a week alone in the woods (AP/Chicago Tribune)
• Forum big draw for little people (Windsor, Ontario, Star)
• Little People of America conference fights stereotypes, discrimination (Detroit Free Press)
• Britain recruiting people with disabilities to become teachers ([UK] Guardian)
• Washington’s right-to-die battle is personal (Los Angeles Times)
• Larger special ed classes upset parents (Detroit News)
• Special education students more likely to face disciplinary action (Fort Worth Star-Telegram)
• Ian Ziering speaks out about his dyslexia (People magazine)
• In Poland, Chopin’s heart may hold secret of his death (Agence France Presse)
• Gatlin challenges doping ban under ADA (Canadian Broadcasting Corp.)
• Court: Connecticut falls short in helping residents leave institution (Newsday)

From Polskie Radio, Poland’s radio network:

Frederic Chopin, widely regarded as Poland’s greatest composer, died of complications of cystic fibrosis, according to Professor Wojciech Cichy of the Medical University in Poznan. Reports at the time of Chopin’s death in 1849 had attributed his death to tuberculosis.

As evidence, Prof. Cichy points to the presence of nodules on the surface of the composer’s heart, cited in the autopsy report, as well as the medical history of members of Chopin’s immediate family. Two of his three sisters died of lung diseases, the youngest at the age of 15. Chopin died at age 39 .

Cystic fibrosis is a hereditary condition that was not recognized until the 1930s, long after the composer’s death. Prof. Cichy says he hopes to be able to carry out further genetic research on the basis of material taken from the remains of Emilia Chopin, Frederic’s sister.

A review article in the Journal of Applied Genetics in 2003 concluded that CF was a “probable cause” of Chopin’s death. The authors called for more research on the subject:

Is it justifiable to deepen our knowledge about the great Polish composer, but foremost to give hope and meaning to those who nowadays suffer from genetically inherited disorders? Is it not right to make an attempt to prove to many suffering people that many things count in life much more than a weak physical body, and that they are not predestined to vanish without leaving something that will influence, inspire and enrich the generations to come?

From the Birmingham [Alabama] News,

Starting this week, all newborns in Alabama will be tested for cystic fibrosis, and health officials are hoping that early identification will lead to early treatment and better outcomes for children. The test for the genetic disorder had been in the works for some time, but was held up until the state assured that it had adequate capacity to provide testing in its cystic fibrosis centers in Birmingham and Mobile.

The screening should identify about 250 to 300 babies in the state annually who are at least carriers of the disease. Doctors expect further testing at one of the cystic fibrosis centers to find about 25 to 30 new cases of the disease each year. Parents of babies who are carriers but do not have the disease will be consulted about genetic testing for future pregnancies.

From the Windsor [Ontario] Star:

All babies born in Ontario will now be screened for CF.

The Canadian Cystic Fibrosis Foundation applauded the move, saying diagnosing and treating CF before symptoms emerge can improve life expectancy for people with CF and help them live more productive lives.

Ontario is the second Canadian province, after Alberta, to offer CF screening for newborns. British Columbia and Saskatchewan are also looking into making the screening available.

From the Baltimore Sun:

A generation ago, few people with cystic fibrosis lived past their teens. Today, people like Jeff Davis (during a health check at left with his wife and son) are reaching milestones doctors never thought possible.

“We now expect children to live into adulthood and to be healthy as well,” said Dr. Peter Mogaysal, director of the cystic fibrosis center at the Johns Hopkins Children’s Center.

… A steady progression of drugs, medical devices and improvements in disease management has made it possible for patients not only to survive longer, but also to attend college, have careers and raise families. By the early 1980s, median survival had risen to 21 years. Today, it is 37.