As National Family Support Coordinator I frequently observe the strength and determination it takes to live with ‘the worst disease you’ve never heard of’. To say caring for individuals living with EB takes a lot of courage and hard work is an understatement. It’s relentless, gruelling and takes nothing but sheer grit and dedication to get through each day. Watching individuals and families living with EB is heartbreaking, and seeing the pain they experience and push through on a daily basis is devastating. But the resilience they show is inspiring and they are such an amazing group of people. Our community holds a special bond amongst families which is bought together by DEBRA.
Through our family support program we are able to provide a holistic care approach with coordination of care and access to appropriate services to promote independence and quality of life. Whilst our families confide and lean on me for social and emotional support, they also embrace each other and share ideas to enrich the quality of care provided.
Not only has EB impacted me within the role I hold at DEBRA, but I’ve also experienced this cruel disease personally. My daughter Eliza battled with RDEB for almost 18 years and sadly passed away almost 3 years ago, so I understand the impact EB has on adults and children, along with their mums, dads, siblings and extended family.
It’s a honour to support our families with necessary items to get through each day, and to connect with their treating doctors, nurses, educational bodies, local support groups, nursing agencies and personal support networks. But most of all it’s an absolute privilege to gain their trust and have them confide in me by sharing their fears, tears, highs and lows of living with this incredibly sad, challenging and debilitating disease.