Prompt investigation of signs and symptoms is vital to diagnose retinoblastoma early. Timely diagnosis provides the best opportunity to save a child’s life and sight. For Retinoblastoma Awareness Week 2022, Rb Care Coordinator Sandra Staffieri explores the signs and symptoms that may lead to a diagnosis of childhood eye cancer.
A retinoblastoma diagnosis is shocking for parents, and the journey through complex specialist care can be highly stressful. RB1 genetics mean this cancer often affects more than one child in a family. Leslie Low shares her experience of caring for her triplets – all diagnosed with cancer in both eyes, and the things that helped her family cope; physically, psychologically, and practically.
On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.
Thursday October 14 is World Sight Day, and this year’s global campaign is “Love Your Eyes”. The International Association for the Prevention of Blindness encourages us to prevent eye disease with a healthy lifestyle, protect our eyes with small daily actions, preserve vision with regular eye exams, and prioritize eye health. Bilateral Rb Survivor. Abby White, shares 10 ways you can love your eyes every day.
As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.
When children may inherit retinoblastoma, deciding how to start a family awakens new feelings in survivors. Every possible option comes with complex questions and emotional costs, and survivors and their partners may experience feelings of isolation as they navigate their decisions. Rb survivor Ruth Greenslade shares her reasons for deciding to have children, and her personal perspective of factors to consider when conceiving with heritable Rb.
How would you access the information in an image if you can’t see it? How would you enjoy it and feel part of the community talking about it? Making images accessible to blind and partially sighted people is vital. Bilateral Rb Survivor. Abby White, explains what alt-text is, how to provide inclusive image description, and why this matters in our retinoblastoma community.
Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.