Comfort Of Community
How It All Started: The Strength of the TSB Community
One of the most powerful aspects of The Silent Bleed (TSB) is the community that has grown around it. For people living with superficial siderosis (SS), and for the families and carers who support them, the journey can often feel isolating and uncertain.
Because SS is such a rare and poorly understood neurological condition, many people spend years searching for answers, support, and others who truly understand what they are experiencing. This is exactly why the TSB Facebook community group has become such an important space for connection, compassion, and shared understanding.
Recently, several members of our community shared their experiences — stories that highlight both the challenges of living with SS and the invaluable role of community support.
Finding Others Who Understand.

Sharon shared her family’s journey with SS:
Her mother was diagnosed with superficial siderosis approximately five years ago, although symptoms had appeared many years earlier. Now aged 87, she lives in a care home and requires 24-hour support. Her speech and hearing have been affected, along with her cognitive abilities. At one point she was given a diagnosis of vascular dementia to ensure she could access the care she needed.
Despite these challenges, Sharon continues to stay connected with others facing similar experiences through the TSB community — something she says helps families feel less alone.

When the Journey Becomes Overwhelming
For Sarah, the past few years have been incredibly difficult. Her husband, now 57, moved into a nursing home in September 2024 after significant progression of symptoms. His condition includes severe hearing loss, worsening ataxia affecting mobility, speech difficulties, and profound short-term memory loss.
Like many families living with rare diseases, Sarah describes the emotional toll of navigating an illness that few people understand.
“It’s such a sad disease with barely any recognition, and no understanding of the help needed for families. Families that don't know what to expect with this illness or where to turn for help.”
These are exactly the situations where the TSB community becomes a lifeline — a place where people can share experiences openly and receive support from others who truly understand the reality of the condition.

Support From Those Who Have Walked the Path
Another member of the community, offered words of encouragement drawn from her own experience caring for her husband through the later stages of SS. After years of progressive hearing loss, strokes, and declining mobility, her husband passed away four years ago.
Her message to others facing similar challenges was simple but powerful: keep going and lean on the community around you.
These shared experiences remind us that while every journey is different, no one has to face it alone.

Navigating Treatment Challenges Together
Janet also shared the ongoing challenges her family faces while supporting her husband. Access to medication has been complicated by shipping delays and supply disruptions, and as a result his symptoms have progressed. The family is now adapting their home to accommodate increased mobility needs, including the use of a wheelchair.
Like many carers in the group, Janet highlighted the importance of sharing information and learning from others who have faced similar situations.
In rare diseases, community knowledge often becomes a vital resource — helping families navigate treatments, care arrangements, and day-to-day challenges.

Why the TSB Facebook Community Matters
The stories shared within the TSB Facebook group illustrate why community matters so deeply for people affected by superficial siderosis.
Within the group, members can:
Share lived experiences with others who understand the condition
Ask questions and exchange practical advice
Learn about treatment options, research developments, and advocacy efforts
Find emotional support during difficult stages of the journey
Connect carers and families who might otherwise feel completely isolated
Most importantly, the group reminds everyone involved that they are not alone.

A Community That Continues to Grow
What started as a small group of individuals seeking answers has grown into a global support network of patients, carers, clinicians, and advocates. Every conversation, shared experience, and message of encouragement helps strengthen that network.
Superficial siderosis may be rare — but together, the voices of this community are becoming impossible to ignore.
Through connection, compassion, and collective advocacy, The Silent Bleed community continues to turn isolation into solidarity and silence into support.
-Debbie Ebiniyi