Scleroderma Took My Sister… Now I’m Carrying On Her Legacy | Grief, Healing & Finding Purpose

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 fundraising, charity work, television opportunities and even learning to figure skate helped him rebuild his confidence and discover who he was becoming.

This is an honest conversation about resilience, healing after loss, finding light in life’s darkest moments, and believing that even after unimaginable heartbreak, hope can still exist.

Whether you’ve experienced grief, lost a sibling, supported someone through illness, struggled with your mental health, or simply need reminding that life can grow around pain, Alex’s story is one that will stay with you long after the episode ends.

In this episode we discuss:

• Grief, bereavement and sibling loss
• Systemic sclerosis (scleroderma) and rare autoimmune disease awareness
• Mental health, resilience and healing
• Spirituality, signs and finding comfort after loss
• Purpose, advocacy and charity fundraising
• Reality TV, acting and personal growth
• Self-acceptance and rebuilding confidence
• The power of community, storytelling and hope

If this episode resonates with you, please follow Becoming Lucy, leave a review, and share it with someone who may need to hear Alex’s story today.

Guest: Alex Santana

⸻

Resources

• Scleroderma & Raynaud’s UK (SRUK): https://sruk.org/

• Follow Giselle Tik Tok : https://www.tiktok.com/@gisellebalfour?_r=1&_t=ZG-97qLcrN0pAO

• Follow Alex Instagram: https://www.instagram.com/alex.santana91?igsh=MXNhbmh0dW5rbXhveQ==

• TikTok: @mralexsantana

⸻

Chapters

00:00 – Why Alex is sharing Giselle’s story

02:16 – The unexpected moments that change your life forever

03:28 – Growing up in Scotland and feeling different

05:42 – Childhood, identity and finding where you belong

09:36 – Discovering a passion for performing

11:21 – Leaving hairdressing behind for a career in TV

12:24 – Starting over in London and facing rejection

17:44 – Learning resilience through life’s setbacks

19:44 – The moment Giselle was diagnosed with scleroderma

21:56 – Who Giselle really was beyond her illness

25:30 – Losing his sister at just 38 years old

33:30 – Turning grief into purpose through awareness and fundraising

44:54 – Healing after loss and rebuilding a life

56:10 – Spirituality, signs and feeling connected to Giselle

1:05:29 – TV, documentaries and what’s next for Alex

1:24:02 – Why believing in yourself changes everything

1:25:29 – Who Alex is becoming

⸻

⚠️ Podcast Disclaimer

• Informational Only: This content is for general information and entertainment. It is not professional advice (legal, medical, financial, or otherwise).

• No Guarantees: We do not guarantee the accuracy, completeness, or outcomes from using the information shared.

• Personal Views: Opinions expressed are those of the hosts and guests and do not reflect the official positions of any affiliated organisations.

• No Liability: We are not liable for any actions taken based on this podcast.

• External Links: We are not responsible for content found on any external sites mentioned.