On July 23, 2016 the CMTC-OVM US Organization held their annual conference. This year the conference was located in Columbus, Ohio at the Courtyard Marriott Downtown.
Prior to the meeting on Saturday was the Friday family day. The purpose of the family day is to help people meet in an informal atmosphere so that it is easier to make contact the next day at the membership meeting.

Becky Gallis, President of the American organization opened the meeting, after which Tabatha Broussard as treasurer gave a financial statement. Finally Andrea West as fundraising chair shared how revenues are acquired. In the USA there is no subsidy from the government such as an organization in the Netherlands and must generate its own revenue.

On behalf of the CMTC-OVM organization in the Netherlands, Lex van der Heijden participated in the conference and gave a presentation. In 2005 Lex started organizing meetings for people with CMTC and this activity has expanded in the course of the years. In 2011 an independent American organization was set up. Lex' outline included the history of the origin of the Dutch organization in 1997, the start of the activities in 2005 in the USA and then the start of the CMTC-OVM organization in 2011. Furthermore Lex gave an overview of possible complications per body region and a summary of the presentation by Prof. Dr. Oranje about laser treatment (this presentation is also included on video and is available to members through the global CMTC-OVM Netherlands website).

 

Free air transportation for patients needing medical treatment

Jaime Pacecco from Patient AirLift Services gave a presentation on how airline pilots within the USA fly patients to a variety of locations for diagnosis, treatment, etc on a voluntary basis . Their motto is: "Changing lives, One Flight at a Time." CMTC-OVM has also experienced this as a Dutch organization within Europe when a British patient was flown to the Netherlands for treatment. The organisation is going to figure out to what extent it is possible for patients to fly free between for example the USA and Netherlands and vice versa.

 

Leg length difference

Physical therapist dr. Carina Siracusa showed how a person walks and runs with and without leg length difference. In the case of leg length difference without correction the hips skew angle so that the spine is twisted with all sorts of consequences. The biomechanical adaptations and compensations for even a slightly short leg can have long-term side-effects, manifesting as lower back pain, hip and knee pain, uneven gait, and various foot and lower leg problems. There are diverse treatments for leg length difference, but these are also limited. For example children are not always willing to walk with a tool because they then are limited in their movements. Also they don't want such a tool to be visible.

 

Glaucoma

Prof. Elias Traboulsi gave a presentation about CMTC and the impact on the eyes and the sight of a patient. According to him there is still very little research done in this field.
"Our experience is that eye problems, and in particular glaucoma (increased fluid pressure in the eye that can lead to blindness), only occurs if the patient has markers CMTC around eye/forehead. The face can be divided into three horizontal parts: jaw, nose and eyes/forehead. When a patient has CMTC markers around the eye, he/she is at higher risk for glaucoma."
He explained on the basis of pictures how an eye works, what medical problems are possible, and what the effect of this is. People with CMTC in this area have vascular deficits within the eye. This he showed through pictures.

 

Different descriptions for the same condition

Dr. Joan Tamburro, a children's dermatologist, started with talking about the confusion created by the different nomenclature used within medical science. Sometimes there are different descriptions for the same disease/condition. One doctor may diagnose a condition as a hemangioma (an abnormal growth of a collection of blood vessels) while another doctor can diagnose this as dilated blood vessels. Or, while one may refer to CMTC as lesions, another might suggest they are noted as markings.

Furthermore she stressed the importance of patients being seen by a multidisciplinairy team in which several medical specialists from different areas of expertise are brought together.

After lunch, the medical diagnoses by Dr. Joan Tamburro started, which went on into the evening.

Members of our global CMTC-OVM Netherlands Organization also have free access to the videos a presentations of this meeting on the website of the CMTC-OVM USA organization: Link USA website

Presentation Lex van der Heijden (members and physicians only):

 

 

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