Business
- [[ARTICLE COMMENT COUNT]]
- [[ARTICLE VIEW COUNT]]
Navigating Life with 22q11 Deletion Syndrome
Anne's daily routine is shaped by the complex challenges and limitations imposed by 22q11 deletion syndrome, a genetic disorder that affects her mental and sensory processes.
Cameron Jordan
- 2023-12-22
- Updated [[ARTICLE TIME]]
Anne, who was diagnosed with 22q11 deletion syndrome at the age of 12, experiences depression, anxiety, and heightened sensitivity to stimuli due to a missing piece on her 22nd chromosome. The condition necessitates a structured environment with clear instructions, allowing her to focus on one activity each day. Despite her vocational training as a secretarial worker and completion of a level 2 program, she has found maintaining paid employment difficult. Currently, Anne volunteers once weekly in a library, which suits her need for a manageable routine. She resides in a two-room apartment in Driebergen, the Netherlands, with her beloved cats Mickey and Max, and sustains her living on a Wajong welfare benefit of approximately 1,200 euros net per month.
Adapting to Professional and Social Challenges
Throughout her life, Anne has encountered numerous setbacks in her professional endeavors. She initially sought out work as a secretarial worker, followed by an attempt to become an activities coordinator for the elderly with dementia. Due to the demanding nature of these roles and her condition, Anne has been receiving Wajong benefits since 2006. Her social engagements are also limited; she enjoys playing World of Warcraft but avoids in-person events to steer clear of overstimulation. The COVID-19 pandemic, with its enforced isolation, unexpectedly provided her with a period of rest and comfort, resonating with her preferred lifestyle of solitude.
Anne's advocacy work on the Joop opinion website is an outlet for her to articulate her experiences and to champion the rights and understanding of people with disabilities. The recent euthanasia of a friend who shared the same syndrome has deeply affected her, galvanizing her efforts to raise awareness about 22q11 deletion syndrome. Her contact with the benefits agency is routine, as she must regularly communicate her ongoing limitations in response to queries about reintegration into the workforce.
Challenges and Joys of Independence
