VBF 2019 – Athens
Vascular Birthmarks Foundation 2019 – Athens
Report Vascular Birthmarks Foundation 2019 – Athens
The American organisation “Vascular Birthmarks Foundation” held a conference in Athens (Greece) on 7 and 8 June 2019.
Our secretary, Anja Fluijt, participated on behalf of our organisation.
The opening of the Congress on Friday, June 7 is scheduled at 8.00 pm. That means getting out to of bed early. I am staying at the home of our Greek patient advocate, Anestis Giannoudovardis and his family. His little 5-year-old daughter has CMTC. They have been very friendly, and I am having had a really nice time. Only after some delay we begin the first round of presentations. There are 24(!) lectures planned, every 20 minutes. Due to lack of time, the Q & A sessions are skipped and the breaks shortened.
Many renowned physicians from all over the world tell about their experience with congenital vascular abnormalities and treatments. They discuss dealing with congenital vascular aberration, its impact on patients and their families, the genesis, treatment options, and classification systems. The global classification guidelines are tracked by ISSVA and are always updated if there are new insights. Sometimes there is overlap in the classification system if a certain deviation does not fit in one category. Many of the doctors present are members of ISSVA. During this Congress, doctors are asked to give their input for the classification of capillary malformations.
Current treatment options for vascular Anomalies are: medicinal (many side effects that are not yet known, not without risk, and often lifelong), laser (long-lasting, painful, good results with new techniques), sclerotherapy (Injection directly into the vein, spray away, close spraying) or surgery. Many doctors were very positive about using laser therapy as early as possible! There are different types of laser treatments, and there is the possibility of doing this under anaesthetic. There are also ongoing studies of medical treatment of vascular anomalies, even one in Belgium! The first results are promising, but the number of participants will have to be increased for a reliable result. The first day is long and also quite exhausting, but still very interesting! The meeting ends just after 6 p.m.
The next day there is a ‘ think tank ‘ in the morning. There are four discussion sessions on different subjects: arteriovenous malformations, capillary malformations, venous malformations and lymphatic malformations. In each session, each physician writes on a ‘ post-it ‘ a fact about the clinical disease. These are all discussed, and if everyone agrees, this fact remains on the board,. If there is doubt or disagreement the post-it is discarded. Afterwards there are discussions, which are led by the president of the VBF, the American physician Dr. Linda Rozell-Shannon. Again very interesting to be involved. It is agreed that a Staging system is needed, measuring the quality of life. What are the effects a treatment, where the outcomes are measured qualitatively but also quantitatively.
In the afternoon there is a program for patients who have enrolled. A team of physicians performs diagnoses in the EVA clinic (European Vascular Anomaly Clinic) in Athens, provides advice on lifestyle or treatment, and patients can receive free laser treatment. There are also group sessions with a psychologist. This is widely attended.
For me this was the first time I represented our association and I found it very interesting to hear how the international medical world thinks about these matters. Furthermore, I talked to Anestis and his wife about how they could work as a Patient Advocate by establishing contacts with other Greek CMTC (OVM) patients and also share our information leaflets with Greek physicians and refer them to our website.
(*) Anomaly = abnormality, deviation