Member conference NL 2020

As chairman of the CMTC-OVM organization, Lex opened the conference. After an online survey, the minutes of the previous members’ conference were approved. Subsequently, the financial data and the positive findings of the Financial committee were presenteed, after which the attendees discharged the treasurer for the financial year 2019.
The minimum membership fee for the year 2020 is the same as in 2019, i.e. EUR 35.

The budget for the year 2021 was presented. It should be noted that we have submitted a subsidy application to the Ministry of Health, Welfare and Sport (VWS) which is still pending.

The following points were discussed:

1. The Complaints Committee has not received any complaints.
2. The CMTC-OVM organization: we would like to expand the board with two new positions: ‘youth representative’ and ‘patient advocate coordinator’. For this we are still looking for candidates.
3. Overview of the main activities carried out in 2019. An impressive list!
4. Planned activities for 2021 in which we assume that the pandemic has subsided considerably in 2021 so that (international) physical meetings can be organized again.
5. Budget 2021.
6. Our projects: planned, in progress and completed. Important is our global Patient Advocates project: Patient Advocates from all over the world will come to the Netherlands at our expense for training and attending our global conference at the end of October 2021.
7. Personal stories. These are widely read. It would be nice if more people would want to share their personal stories.

The full presentation is available for members and can be viewed at the bottom of this page.

In collaboration with the European organization for rare diseases Eurordis, we have developed the CMTC patient journey.

The patient journey simply means the journey of a patient or client through a hospital, medical center, or other healthcare institution. An analysis of the patient journey helps to gain insight into a patient’s journey. What do you encounter as a patient? It is often a complex journey, in which a patient comes into contact with many people, employees and departments.

We started collecting personal experiences both during a workshop during our membership conference in 2019 and (personal) experiences of Lex van der Heijden, which he has collected since about 1997.

We ask our members to take a look at the patient journey and complement it with their experiences. You can send them via our contact form with the subject ‘CMTC patient journey’. Thank you for your cooperation!

At one point during the conference a discussion arose about being different, looking different. This often can be the reason to cover a leg on which the condition is visible, for example.

Several people reacted to this with remarks such as:

• I am the way I am.
• I am grateful that I have this condition.
• I don’t let it keep me from living my life the way I want to.
• I see my spots as ‘body art’.
• I have a magic bone because the color can change.

Our ambassador Eden from England is a good example of how she stands in life and she expressed this in the video below.

Professor Mikka Vikkula explains in his lecture how scientists are trying to identify the cause of vascular anomalies (such as CMTC). The scientists look for mutations in the DNA of patients that could be the cause of the disease. So far, genes from 11 different hereditary vascular anomalies have been found. These genes have (a) mutation(s) as a result of which the gene -or actually the product, the protein- does not function properly. No specific gene of CMTC has been found yet.

For the entire article, read more at: https://www.cmtc.nl/en/pedia/genetics/searching-for-the-genetic-cause-of-vascular-anomalies-such-as-cmtc/

Dr. Margaret Lee is a pediatric dermatologist in Boston, USA. As a child she was diagnosed with CMTC with a Port wine stain, which she later adapted to DCMO herself after an examination. As a doctor she now treats children who have the same kind of condition as herself. She knows what they are going through and wants to teach children and their parents how to deal with their condition.

For a more detailed report of this lecture please visit: https://www.cmtc.nl/en/pedia/psychology/learning-to-cope-with-your-condition-vascular-anomaly/

Medical questions could be submitted in advance. They were answered by Suzanne during this session.

The following questions were asked:

1. What is the difference between Cutis Marmorata (CM) and Cutis Marmorata Telangiectatica Congenita (CMTC)?
2. What is the difference between M-CM (MCAP), Cutis Marmorata (CM) and Cutis Marmorata Telangiectatica Congenita (CMTC)?
3. What is mosaicism and are all vascular malformations mosaic?
4. How can Diffuse Capillary Malformation with Overgrowth (DCMO) best be described?
5. What is the current status of laser treatment of vascular malformations? Which laser gives the best results? Which parts of the body react best to laser treatment and which parts show no results or hardly any results?
6. I live far away from the Netherlands and cannot afford to come to the Netherlands. In my country there is hardly any knowledge about /experience with vascular malformations. How can I get personal medical advice remotely?
7. Is there a relationship between skin, blood vessels and the lymphatic system?
8. What is hemihypertrophy & hemihyperplasia and what is the cause?
9. Our baby has been diagnosed with Capillary Malformation / local CMTC on one leg (her leg is thinner, same length). Would an MRI have to be done to rule out Klippel-Trenaunay Syndrome? What symptoms should we look for in KTS?
10. Can a tattoo be used to make a vascular malformation less visible?
11. What is sclerotherapy and could it work to reduce (CMTC) spots in combination with varicose veins?
12. Are there risks over time as I get older – for example, the risk of inflammation (although I haven’t had any so far) or the risk of a weakened leg?

The questions and answers are included in our FAQ list