Visual impairment and blindness
Most patients with RB have some or complete vision loss because of the disease itself or the treatments they received. For example, the resulting visual challenges from enucleation can be difficult for families and patients. There are also visual complications such as cataracts that patients can develop after radiation therapy.
Visually impaired children and blind children can still thrive, learn, find a job, have a family of their own and became functional adults. There will be challenges and limitations down the road but there are also multiple resources to help you child succeed.
Here there are local foundations that can help you with information about school and learning programs for blind patients, etc. See section Resources for further information.
School is not only a place where children learn, but also a space to socialize and share with friends. To the extent possible, children should continue to attend school, as it usually has a positive impact on their quality of life.
For further information and resources, please consult the Canadian Cancer Society on school.
Siblings often suffer collateral problems from having their brother or sister diagnosed with a paediatric cancer. They risk 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 a 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 challenges that come with long treatment processes. 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.
In addition, siblings of children with RB might be at risk themselves for the same disease. Genetic counselling is essential in this setting to assure that the whole family is screened for RB and understands the potential risks for their health and their offspring.
If a family of a child with RB and germline mutation in the RB1 gene wants to have another baby, there are some countries where pre-implantation diagnose of the embryo can be performed to select the ones free from the mutation in the RB1 gene. For parents without the mutation but an affected child, the sibling should be monitored closely by a trained ophthalmologist during the first years of life to screen for the disease.
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 can help 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 patient’s 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. It is extremely important to validate all of the information you find online with your treatment team.
RB families have come together to form different on-line support groups. They have an active Facebook group, where you can get recommendations. Also, patients associations are present for paediatric patients affected by retinoblastoma such as Miradas mágicas in Spain.