Vascular anomalies

School

School is not only a place where children learn but also a space to socialize and share with friends. As far as possible, children should continue to attend school as it usually has a positive impact on their quality of life.

It is essential to talk to the school team, including your child’s teacher to discuss how to explain their disease to classmates and to have a process in place as the disease evolves. For further information and resources, please consult the Canadian Cancer Society on schooling.

Siblings

Siblings often suffer collateral problems from having a brother or sister diagnosed with a rare disease. They are at risk of receiving less attention, leading to behaviour and emotional problems. Ensuring emotional and social support for the whole family (patient, parents, siblings and other relatives) is essential for good quality of life and for managing disease-related stress over time.

It is important to discuss the disease with siblings and to prepare them for the end of life process. This will help to decrease their anxiety and reinforce a supportive family environment. In our Paediatric Palliative Care material, you will find this specific chapter on siblings support.

Support groups

External support groups can be helpful when dealing with a recent diagnosis. It is also helpful to share experiences with families and friends who have been affected by a similar condition.

Close friends and relatives are very helpful in coping with the new situation. However, sharing with people who are going through the same situation can sometimes be even more beneficial. Often, you can share disease-related issues with them that are hard to understand if you are not living with a similar situation.

You can ask your healthcare team about patients associations related to your disease. If you also wish to have an online resource available at any time, you can find people to talk to in the Share4Rare community.