Abortion complaint at Mercy dropped – Marfan Syndrome

marfansyndromeuk1.jpgDENVER – The state health department will not pursue a complaint against Mercy Regional Medical Center for its admonishment of a doctor who recommended a patient consider an abortion.

The American Civil Liberties Union asked for an investigation last November after hospital officials admonished Dr. Michael Demos, a cardiologist, after his conversation with a patient about abortion in 2012.

Mercy is a Catholic Health Initiatives hospital, and it takes direction from church teachings against abortion. The ACLU complained that Mercy officials violated state laws that allow doctors to exercise their professional judgment.

But the Colorado Department of Public Health and Environment investigated the charge and decided not to sanction Mercy because Demos practices in a clinic attached to the hospital, not the hospital itself.

“The clinic where the event occurred is not licensed by the department and is not under its jurisdiction, therefore no deficient practice was cited,” said the letter, which was signed by Judy Hughes of the health department’s Health Facilities and Emergency Medical Services Division.

The letter was brief, just four sentences. It stated the health department had conducted an investigation under its authority to regulate hospitals.

“It’s kind of semantics, I think, or a good way of getting around dealing with the problem,” Demos said.

Demos’ clinic is in an office building attached to Mercy and owned by Centura Health, which also operates Mercy. The hospital is owned by Catholic Health Initiatives.

Randy Kuykendall, director of the state Health Facilities division, was not available to comment Thursday afternoon. A spokeswoman said no one else at the department could answer questions about the investigation Thursday.

Mark Silverstein, legal director of the ACLU of Colorado, said the state’s decision does not resolve the dispute about Mercy’s policy, which he believes violates state and federal law.

“Until Dr. Demos hears differently from the hospital, he remains in an unacceptable bind where he must choose between obeying the directive that was conveyed to him by the administrators last year and his medical and ethical obligations to his patients,” Silverstein said in an email.

However, Mercy spokesman David Bruzzese said Mercy does not prevent its doctors from discussing medical options with their patients.

“Patients and our employed physicians are free to use all information in the medical literature to make appropriate medical decisions,” Bruzzese said.

But it’s not consistent with Catholic ethical directives to recommend an abortion, he said.

In early 2012, Demos treated an unnamed pregnant woman with a family history of Marfan syndrome, a disorder of the connective tissue. Women with severe cases of the syndrome can die during childbirth. For some Marfan patients, medical guidelines recommend terminating the pregnancy.

Read More: The Durango Herald


Research Update on Loeys-Dietz Syndrome and Marfan syndrome

Dr. Hal Dietz, Victor A. McKusick Professor of Institute of Genetic Medicine and Professor of Pediatrics and Investigator of Howard Hughes Medical Institute at The Johns Hopkins Hospital and Chair of the Loeys-Dietz Syndrome Foundation Medical Advisory Council (MAC), presents “Research Update on Loeys-Dietz Syndrome” at the 2012 LDSF Conference in Baltimore, Maryland, USA. Dr. Dietz discusses the latest on LDS mice model research findings.

Raising the profile of a rare disorder

articleCharlottetown woman goes public with her story of living with Marfan syndrome

It took the death of her father for Kacey Lamphier to learn she was ill.

Her dad Eddie was seemingly a healthy man when he died suddenly at age 41. Tests determined he had Marfan syndrome.

With the disease being a genetic disorder of the connective tissue, his family members were all tested to see if any of them had the disorder.

Kacey, at age eight, was diagnosed with the condition that can see connective tissue in the heart, lungs, eyes and skeletal and nervous systems and other tissues stretch and weaken. So too did her uncle and her cousin receive the diagnosis of Marfan syndrome following the death of Kacey’s father.

“I was like a tall, lanky kid whose heart was growing too fast,’’ recalls Kacey, who is now 26.

Read More: The Guardian

Common blood pressure drug reduces aortic enlargement in Marfan syndrome – Update

There were no differences in the rate of aortic dissections (0 in the losartan group and 2 controls) or elective aortic surgery (10 in the losartan group and 9 in controls) and no cardiovascular deaths occurred.

marfan syndrome uk logo squareBy European Society of Cardiology, [RxPG] AMSTERDAM, The Netherlands – A common drug that is used to treat high blood pressure in the general population has been found to significantly reduce a dangerous and frequently fatal cardiac problem in patients with Marfan syndrome.

Results of the COMPARE (COzaar in Marfan PAtients Reduces aortic Enlargement) study reveal that patients treated with losartan (Cozaar) had a significantly reduced rate of aortic enlargement after 3 years compared to patients who did not receive the treatment.

Our study is the first large, prospective randomized study to assess the effects of losartan on aortic enlargement in adults with Marfan syndrome, and confirms previous findings in a mouse model, said lead investigator Maarten Groenink MD, PhD from the Departments of Cardiology and Radiology at Academic Medical Centre in Amsterdam, The Netherlands.

We’re very excited to see that such a commonly used drug that is not expensive and has a familiar side-effect profile could have a significant effect on this very serious and frightening risk factor for these patients. These findings may change standard clinical management.

Marfan syndrome, a heritable connective tissue disorder, affects 2-3 in 10,000 people. It causes progressive enlargement of the aorta, making it prone to rupture, which can be fatal in more than 50% of cases. Currently, the only effective treatment is prophylactic surgical aortic root replacement.

In addition to lowering blood pressure, the main benefit of losartan is believed to be its interference with the biochemical process that causes aortic enlargement.

To assess this, the COMPARE study included 233 participants (47% female) with Marfan syndrome from all four academic Marfan screening centers in the Netherlands.

Subjects were a mean age of 41 years, 27% had previously undergone prophylactic aortic root replacement, and the majority (73%) were being treated with beta blockers.

A total of 117 subjects were randomized to receive no further treatment, while 116 were randomized to receive losartan 50 mg daily, doubling after 14 days if there were no side effects.

Aortic enlargement was monitored with magnetic resonance imaging (MRI) for three years of follow-up.

During the study period, if patients in either arm required prophylactic aortic root replacement the decision was left to the discretion of the attending cardiologists based on existing guidelines and anticoagulation therapy was initiated when appropriate.

The study showed that after 3 years aortic root enlargement was significantly less in the losartan group than in controls (0.77 mm vs. 1.35 mm, p=0.014), and 50% of losartan patients showed no growth of the aortic root compared to 31% of controls (p=0.022).

Read More: rxpg news

Staunton native returns as author with a touching story – Marfan syndrome

stauntonA lesson of triumph through life’s trials … the true story of Patrick Gorman, a boy who overcame deafness and Marfan syndrome with the support of his family.

Thousands of children in the United States are diagnosed with deafness each year. Over 50,000 people in the U.S. have been diagnosed with Marfan syndrome, a connective tissue disease that threatens the heart, lungs, and spinal cord. Few have to struggle with both of these illnesses, and even fewer have overcome these disadvantages with the determination and compassion of Patrick Gorman.

Read More: augusta free press

Ronalda’s Song debuts at Good Samaritan UMC – Marfan Syndrome

Ronalda PierceOn June 4, 2004, Ronalda Pierce, from Ashburn, GA, a potential superstar for the FSU women’s basketball team, died suddenly of an aneurysm at the age of 19. Her death was brought about by the silent killer Marfan’s Syndrome.

Ronalda had been taking a “Death & Dying” course at Florida State University and one of the class assignments was for the students to design their own funeral. As a part of her funeral she wrote a poem to be read many years later, or so the thought.

Having worked the Seminole sports beat for well over 30 years, I became very close to Ronalda’s story and that Seminole team of 2004-05. So while working on a book and a screenplay about the story, I was inspired to convert Ronalda’s poem into Ronalda’s song.

Read More: Taliahassee

SL mom creates beach glass jewelry in support of son with Marfan Syndrome

tonyaMost mothers will do anything for their children. When Tanner Hoops was diagnosed at the age of 3 with Marfan Syndrome, mom Tonya Archer, after finding him a team of doctors that knew how to treat the condition, immediately became involved with the Heart of Iowa Chapter of the National Marfan Foundation and raising funds to help spread awareness for this disorder.
One way in which Tonya has done so is to design, create and sell wonderful jewelry from beach glass, from shells and coral, from turquoise, and giving from 50 percent to 100 percent of her profits to the foundation.

“I just wanted Tanner to know he was not in this by himself,” she said.

Tanner, a senior this year at Storm Lake High School, appreciates his mom’s involvement with the foundation and is quick to say how awesome her creations are.
Marfan Syndrome is a disorder of connective tissue – that which holds all parts of the body together and helps control how the body grows. Because connective tissue is found throughout the body, Marfan Syndrome features can occur in many different parts of the body.

Read More: Pilot Tribune