Cincinnati Children's Hospital Medical Center Logo

Marfan / Ehlers-Danlos Clinic

Loading...
Loading...

Multidisciplinary Clinic

Major Referral Center

"The Marfan Syndrome / Ehlers-Danlos Syndrome Clinic at Cincinnati Children’s is unique to the Midwest and is a major referral center for effective treatment of these inherited conditions, which often affect the heart."

Richard Meyer, MD, Co-director, Marfan / Ehlers-Danlos Clinic

The Marfan Syndrome / Ehlers-Danlos Syndrome Clinic at Cincinnati Children's Hospital Medical Center is an integral part of the Heart Institute's premier services to treat cardiac-related illnesses. This multidisciplinary clinic is a leader in the evaluation, diagnosis and management of adults and children suspected of having either Marfan syndrome or Ehlers-Danlos syndrome connective tissue disorders, seeing patients from as far away as New York, Florida and New Mexico.

The clinic is multidisciplinary, ensuring that patients with Marfan syndrome / Ehlers-Danlos syndrome have the critical access to state-of-the-art diagnostic and management services from highly skilled specialists in cardiology, cardiovascular surgery, ophthalmology, orthopaedics and genetics.

Marfan Syndrome

Marfan syndrome is an inherited condition that can affect the heart, blood vessels, lungs, eyes, bones and ligaments. In Marfan syndrome, the protein necessary for strengthening the connective tissue does not work properly, affecting the growth and development of the body.

Approximately 90 percent of patients with Marfan syndrome experience changes in their heart or blood vessels, the most serious problem being a weakness of the aorta, the body’s largest artery. People with Marfan syndrome often develop enlarged aortic vessels or thoracic aortic aneurysms, and without treatment, they are at risk from dissection or tearing of the aorta. Patients who do not respond to medication are referred to the Division of Cardiothoracic Surgery for replacement of their aortas.

Ehlers-Danlos Syndrome (EDS)

The Heart Institute is a major Midwest referral center for Ehlers-Danlos syndrome (EDS), a group of inherited disorders that weaken connective tissues that support skin, bones, blood vessels and other organs. EDS usually affects the skin, joints and blood vessel walls. Symptoms include loose joints; fragile, small blood vessels; abnormal scar formation and wound healing; and soft, velvety, stretchy skin that bruises easily.

The clinic has been following 370 patients with Ehlers-Danlos syndrome since it was founded in 1998.

There are several types of EDS that can range from mild to life-threatening. Treatment involves managing symptoms and includes learning how to protect joints and prevent injuries.

Clinic Information

Approximately one in every 5,000 people worldwide are diagnosed with either Marfan syndrome or Ehlers-Danlos syndrome.

Contact the Marfan Syndrome / Ehlers-Danlos Syndrome Clinic

The Marfan Syndrome / Ehlers-Danlos Syndrome Clinic is open on Wednesdays and can be reached at 513-636-4351.