A successful and deeply impactful monthly Virtual Learning Webinar was held today in recognition of World Mental Health Day, bringing together participants from four countries across different regions. This international turnout reflected the global relevance of the topic and the shared experiences of individuals and families living with Osteogenesis Imperfecta (OI). While OI is widely known for its physical challenges, the session highlighted something equally important yet far less acknowledged—the mental and emotional toll of living with a lifelong rare condition.

The webinar created a warm, open, and inclusive atmosphere where expert speakers, mental health advocates, medical professionals, and community members came together with a common purpose: to shed light on an aspect of OI that is too often overlooked. Living with OI involves far more than managing fractures or physical symptoms. The emotional experiences—fear, worry, depression, anxiety, frustration, loneliness—are just as real and deserving of understanding and support.

From the very beginning of the session, attendees expressed appreciation for the opportunity to gather in a space dedicated specifically to mental wellness. The session began with an overview of how OI affects mental health across different stages of life. Speakers explained that for many individuals, chronic pain and physical limitations can lead to feelings of isolation. At the same time, the unpredictability of fractures and medical procedures can contribute to persistent stress and anxiety. Caregivers and parents, too, often carry a significant emotional load, balancing their desire to keep their loved one safe with the hope of allowing independence and a fulfilling life.

As the discussions unfolded, the group explored a range of emotional challenges that people with OI frequently face. Chronic pain—constant, unpredictable, and exhausting—was one of the most cited issues. Many attendees described how pain not only impacts daily functioning but also influences mood, sleep, ability to socialise, and even relationships. One speaker, a mental health professional, emphasised that chronic pain is not simply a physical symptom but a mental health factor, shaping how individuals view themselves and the world around them.

Participants also discussed the social limitations that often accompany OI. Limited mobility, fatigue, fear of injury, and physical accessibility barriers can make social events, gatherings, or even everyday errands feel intimidating or unattainable. Over time, this can lead to withdrawal or feelings of disconnection from peers. Several attendees noted that although they wanted to participate fully in community life, the emotional weight of these barriers sometimes left them feeling “left out” or “different.”

A key theme throughout the webinar was the importance of psychological support as a standard part of OI care. Just as physical needs require medical attention, emotional well-being benefits from professional support, peer connection, and community understanding. Speakers encouraged attendees to view mental health care not as an afterthought but as an essential component of living well with OI.

While the discussion touched on serious and sometimes painful topics, the webinar’s tone was far from sombre. Instead, it was marked by courage, shared understanding, and a sense of solidarity. Participants openly expressed their feelings and experiences, many of them for the first time in a public space. These personal reflections were among the most powerful moments of the session.

One attendee shared a moving testimonial:

“For the first time, I felt seen. Hearing others speak openly about the emotional weight of OI reminded me that I’m not alone in this journey.”

This honest reflection resonated deeply with others, many of whom expressed similar sentiments in the chat.

Another participant added.

“Living with OI can be isolating, especially when people focus only on the physical symptoms. Today reminded me that my feelings matter too. It was comforting to hear experiences so similar to my own.”

A caregiver also shared a heartfelt observation:

“As a parent, I’m constantly focused on the medical side of things—appointments, treatments, safety. I sometimes forget to acknowledge my own stress or emotional needs. Listening to others today helped me realise that I have to care for myself as well. It was reassuring to know I’m not the only one who feels this way.”

Through these testimonials, the session became not only educational but deeply human. Attendees felt validated, understood, and connected—a significant outcome in a community that spans multiple countries, cultures, and time zones.

The webinar also provided practical resources, including coping strategies, mental health tools, peer support opportunities, and information on accessing counselling services. Speakers emphasised mindfulness practices, pain-management techniques, journaling, building a support network, and knowing when to reach out for professional help. Participants had the chance to ask questions in real time, deepening the dialogue and ensuring that the content was grounded in real needs and lived experience.

In the final moments of the meeting, the facilitators encouraged attendees to continue these conversations beyond World Mental Health Day. Raising awareness, reducing stigma, and supporting one another is an ongoing effort—and one that grows stronger with each shared experience. The event closed with a sense of hope, empowerment, and determination to prioritise mental health in everyday life.

Many participants expressed their gratitude for the opportunity to engage in such meaningful dialogue. The sense of community that emerged—despite physical distance—was a reminder of the strength, resilience, and unbreakable spirit of those living with OI and those who support them.
As we reflect on this enriching and emotionally resonant session, we extend heartfelt thanks to everyone who attended, shared, listened, and contributed. The success of today’s webinar highlights the ongoing need for open conversation, accessible support, and global connection within the OI community.

We warmly invite you to join us for our next Virtual Learning Meeting in November, where we will continue learning, growing, and uplifting one another.

#WorldMentalHealthDay2025
#MentalHealthAwareness
#UnbreakableSpirit