INTERVIEW: Spinal Muscular Atrophy Awareness Month: A Conversation with Bianca Özcan

Windhoek, Namibia – In a recent interview with Future Media’s Leonard Witbeen, Bianca Özcan, a passionate advocate for rare diseases, highlighted the critical issues surrounding Spinal Muscular Atrophy (SMA) during August’s Spinal Muscular Atrophy Awareness Month.

Bianca began by addressing the profound impact SMA has on individuals and families. “SMA is a rare, progressive neuromuscular condition characterized by muscle weakness and atrophy, which can severely affect daily activities such as breathing, swallowing, and movement,” she explained. “The condition is most commonly diagnosed in infants and can lead to significant health challenges.”

The interview touched on the various types of SMA, including:

• Type 1: Occurring from birth to six months, where infants cannot sit unassisted.
• Type 2: Developing between six and 18 months, where infants can sit but not walk without support.

Bianca shared the emotional burden faced by families dealing with SMA, emphasizing the need for compassion and support. She recounted a particularly touching story of a young couple who, unaware of SMA until it affected their first child, now grapples with the challenges of the condition. “Parents of children with SMA face unimaginable difficulties. We must practice kindness and support these families through their struggles.”

The theme for this year’s SMA Awareness Month is “#WeAreOne,” which aims to unite diverse communities in a common goal: improving the lives of those affected by SMA. Bianca expressed her hopes for advancements in research and treatment, emphasizing the collective dream of a better world for individuals with SMA.

In Namibia, the focus for this month includes a robust awareness campaign on social media, aiming to reach and support more patients. “Our goal is to flood social media with information about SMA and how to get support,” Bianca said. “Awareness is crucial for early diagnosis and effective advocacy.”

Looking ahead, Bianca also mentioned the upcoming Genes for Hope Dress Up Day, organized by Multiple Sclerosis Namibia. This event, scheduled for August 30th, encourages participants to dress in jeans and make a small donation to support the organization’s work in raising awareness for Multiple Sclerosis.

Bianca’s dedication to rare disease advocacy reflects a broader commitment to supporting those affected by challenging conditions. Her message is clear: “For everyone living with a rare condition, you are not alone. We are one.”

Future Media thanks Bianca Özcan for her time and insights. Her efforts continue to inspire and mobilize support for those in need, reinforcing the importance of community and compassion in the fight against rare diseases.

For more information on Spinal Muscular Atrophy and how to get involved, follow the awareness campaign on social media and reach out to local support organizations. Together, we can make a difference.