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

St. George’s Erika Crawford tells her story in the hope that others will give – EDS

CRAWFORDErika Crawford had 56 blood transfusions last year.

The 18-year-old from St. George was diagnosed with S1 protein deficiency, a clotting disorder, an iron deficiency and Ehlers-Danlos syndrome — a connective tissue disorder that effects her muscles, joints and organs — in 2012.

She has had many surgeries, including a skull realignment, total ACL repair, spine decompression and more.

“It’s a progressive disease,” she said. “I know it’s only going to get worse.”

Without the blood transfusions that keep her stable, Crawford would have many more problems — or worse. She may not be here.

“I know what it’s like to be sick,” she said. “There are so many other people who need support and I want to give back.”

Read More: Brant News

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

Young Limerick mum battles pain worse than child birth – EDS


IMAGINE being worried about dislocating your shoulder every time you brush your hair.

This is what faces one young Limerick lady with a rare condition called Ehlers-Danlos syndrome (EDS). It affects around one in 10,000 men and women.

Zondra Meaney, aged 28, says she is in chronic pain every day but also gets flare-ups that are worse than child birth.

“When I had my son that pain doesn’t even compare to the pain that I get. In my own way I have a high tolerance to pain because I am used to pain but I do feel a lot of pain as well. I am in pain every day.

“When I went in to hospital they gave me two IV shots of morphine, a shot of tramazol, codeine, two drips of paracetamol –
this was all together and that only took the edge of the pain I was in,” said Zondra, who has been in University Hospital Limerick or housebound for the last couple of months.

The Dooradoyle mum of one says EDS is a connective tissue disorder.

“Basically connective tissue is the glue that holds your body together. Everything in your body is made up of connective tissue. EDS can affect people in different ways – it can be mild and it can be life threatening.

“How it started with me was muscular weakness and joint problems. When we looked back, when I was a child I would have had a lot of broken bones and sprains.

“Now my joints dislocate quite easily, especially my hip joints. My hip joints dislocate on a daily basis so that will lead to a lot of joint pain. It also affects my cardiovascular system called postural orthostatic tachycardia syndrome (POTS). I have to take something to constrict my blood vessels because when I stand up my blood vessels don’t constrict so what happens is my blood flows into my legs so there is no blood going to my brain.

Read More: Limerick Leader

Caroline on track for more medals after Lions boost – EDS

fbA WORLD champion indoor rower with Northumberland roots has received vital support from a Morpeth community organisation.

Caroline MacDonald, who suffers from Ehlers-Danlos syndrome, has made big waves in adaptive rowing in the Arms and Shoulders category.

She is the current world record-holder and champion over one kilometre and she is a European and British outdoor champion.

Unfortunately, last year she broke her specially-adapted rowing seat used for indoor training and competitions.

Caroline started fund-raising with the help of her family, but it was taking months to raise the total needed and she was losing valuable training time.

However, Margaret Trewick of Morpeth Lions came to hear of her efforts through her parents in Ashington and put forward a case for funding help from her local club.

Read More: Morpeth Herald

Dog brings hope to Ehlers-Danlos Syndrome sufferer

Meredith ButenhoffTo look at 16-year-old Meredith Butenhoff, one would think that she’s the picture of health. The pretty blonde high school student from Greenville has a ready smile and speaks with a soft melodic voice that belies the fact she suffers from Ehlers-Danlos Syndrome (EDH), a condition that causes chronic fatigue, dizziness, and joint pain.

Meredith was diagnosed with EDH at the age of 11 and she, along with her family, have been courageously battling the syndrome and endeavoring to lead as normal a life as possible ever since. About three years ago, a ray of hope came into their lives in the shape of a dog.

While the family was attending a medical conference, they learned about Palmetto Animal Assisted Life Services or PAALS, a South Carolina based organization that trains and places assistant service dogs with individuals such as Meredith who need help with daily tasks that the average person takes for granted.

“Most people don’t think twice about things like turning on a light switch or opening a door, but these are things that are a real challenge to our clients,” said Jennifer Rogers, PAALS executive director. “We train our dogs to do up to 70 behaviors that can assist people with a variety of disabilities so they can live more independent and enriched lives.”

Read More: The Columbia Star