Scleroderma Took My Sister… Now I’m Carrying On Her Legacy | Grief, Healing & Finding Purpose
About this episode
Alex Santana shares his journey of grief and healing after losing his sister to scleroderma, exploring themes of purpose and advocacy.
When Alex Santana lost his sister, Giselle, to the rare autoimmune disease systemic sclerosis (scleroderma), his world changed forever. What followed was a journey through unimaginable grief, mental health struggles and searching for purpose—one that would ultimately transform heartbreak into hope. In this deeply moving episode of Becoming Lucy , Alex opens up about growing up in Scotland, chasing bigger dreams, stepping into the world of television and reality TV, and how losing Giselle at just 38 years old reshaped every part of his life. Together, we explore the devastating reality of sibling loss, the impact of rare autoimmune diseases, and the emotional toll of watching someone you love battle a life-limiting illness. Alex shares the final moments with his sister, the grief that followed, and why he now dedicates his life to raising awareness of scleroderma and supporting others facing bereavement. We also dive into spirituality, signs from loved ones, mental health, self-acceptance, finding purpose after loss, and the healing power of community. Alex reflects on how social media unexpectedly became part of his recovery, why advocacy gave his grief meaning, and how…
People in this episode
Host: Lucy Hodgkinson
Guest: Alex Santana
Topics covered
- grief
- healing
- purpose
- sibling loss
- autoimmune disease
- mental health
- advocacy
Keywords
- scleroderma
- grief
- healing
- mental health
- advocacy
- sibling loss
- autoimmune disease
- community
- purpose
- resilience
Mentioned in this episode
Organizations: Becoming Lucy
Books & works: systemic sclerosis, scleroderma
Places: Scotland
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- I THOUGHT I WAS GOING TO DIE… | Surviving a Violent Attack Abroad, PTSD & Learning to Feel Safe Again
- I Was Living the Dream… So Why Wasn’t I Happy? | Anxiety, Depression & Learning to Live in the Grey
- I Thought I’d Met The One… Then He Threatened To Kill Me | Love Bombing, Coercive Control & Domestic Abuse
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