Fahr better to know
Living with Fahr’s disease: finding strength in the journey
As the only registered UK charity dedicated to those with Fahr’s disease, Fahr Beyond offers support, guidance and a lifeline to those diagnosed with the condition. It encourages the community to pursue their passions and focus on their strengths to live a full life
Fahr’s disease, also known as primary familial brain calcification, is a rare, genetically inherited neurodegenerative condition marked by abnormal calcium deposits in areas of the brain that control movement. For those diagnosed, the journey can be complex, emotional and deeply personal. But as the UK-based charity, Fahr Beyond, reminds us, a diagnosis is not the end, it’s the beginning of a new chapter filled with resilience, adaptation and a growing community.
Understanding Fahr’s disease
Fahr’s disease typically presents in adulthood, often in the 40s or 50s, although it can appear earlier, particularly if genetic testing is done early on. Symptoms vary widely and may include motor dysfunction, speech difficulties, seizures, headaches and psychological changes. Some individuals experience symptoms similar to Parkinson’s disease, such as tremors, muscle rigidity and a shuffling gait. However, not everyone with Fahr’s will develop symptoms, and some people live symptom-free lives. Getting the right diagnosis is essential and to be definitive it needs to involve getting a CT scan, genetic testing and other tests.
The condition is degenerative, meaning symptoms may worsen over time. Yet, the progression is unpredictable and many patients maintain a good quality of life for years without getting worse. Fahr Beyond emphasises that while the disease can be life-altering, it is not necessarily life-ending.
The emotional impact of diagnosis
Receiving a diagnosis of Fahr’s disease can be overwhelming. Many patients report feelings of confusion, anger, helplessness and grief. These emotions are natural responses to a life-changing event. Fahr Beyond encourages patients to acknowledge these feelings and seek support, reminding them that acceptance is a process that unfolds differently for everyone.
Importantly, the charity stresses that a diagnosis should not be viewed as a loss of life or purpose. Instead it can be a catalyst for personal growth, advocacy and connection with others facing similar challenges. John, 58, said that the anxiety he felt before getting a diagnosis was overwhelming but having the support of Fahr Beyond helped him work through that to start living life again.
Building a supportive environment
Living with Fahr’s disease requires a strong support network. Family, friends, colleagues and healthcare professionals all play vital roles in helping patients navigate their journey. Fahr Beyond offers resources and community spaces where individuals can share experiences, ask questions and find comfort in knowing they are not alone.
In the UK, patients are protected under disability laws, which means they may be eligible for workplace accommodations and financial support. These protections can help individuals maintain independence and continue contributing meaningfully to their communities. Fahr Beyond brings the community together online, helping to better connect patients and their families and help combat loneliness.
Managing symptoms and seeking care
As Fahr’s disease affects each person differently, treatment focuses on managing symptoms rather than curing the condition. Regular check-ins with neurologists or consultants are essential, especially if new or worsening symptoms appear. Fahr Beyond advises patients to be proactive in seeking medical advice and not to hesitate in reaching out for help. Crucially, in the UK, people can access the NHS Fahr’s referral service at the National Hospital for Neurology and Neurosurgery in London. This has been a vital breakthrough in transforming the care and support of people with Fahr’s and helps to have better outcomes.
Lifestyle adjustments, such as physiotherapy, speech therapy and mental health support can make a significant difference in mitigating the severity of symptoms. Maintaining a healthy routine, staying active and engaging in fulfilling activities are all part of living well with Fahr’s.
Advocacy and awareness
Fahr Beyond is the world’s only registered charity dedicated exclusively to supporting people with Fahr’s disease. Founded by Adam Tate in 2016, who was misdiagnosed in 2014 and later confirmed to have Fahr’s in 2021, the charity aims to raise awareness, support research and provide a lifeline to those affected.
The charity works closely with medical professionals to improve diagnosis and understanding of the condition in the UK and globally. Through webinars, educational materials and the development of the Fahr’s Biobank, Fahr Beyond is paving the way for better care and recognition. Over the last 9 years Fahr Beyond has support over £1.4 million into research and care for people with Fahr’s.
Living fully with Fahr’s
One of the most powerful messages from Fahr Beyond is that life with Fahr’s disease can still be rich, meaningful and joyful. People with Fahr’s are encouraged to set realistic expectations, embrace their strengths and continue pursuing passions and goals. Whether it’s through art, volunteering, work or family life, there are countless ways to thrive.
The charity’s website shares stories of individuals who have turned their diagnosis into a source of empowerment. These stories highlight the importance of community, self-care and hope. Craig, who has Fahr’s, says “…you can carry on a very productive life but you have to work a little harder that’s all! Just look around and you will see what I mean. I am very thankful every day!“
Final thoughts
Fahr’s Disease may be rare (or not so rare if it were spotted by clinicians early), but the strength of those living with it is extraordinary. With the right support, medical care and mindset, patients can lead fulfilling lives. Fahr Beyond stands as a beacon of hope, reminding everyone affected that they are not alone—and that their journey matters.
If you or a loved one has been diagnosed with Fahr’s disease, consider connecting with Fahr Beyond. Their resources, community and advocacy efforts are designed to uplift and empower. As they say: “Fahr’s diagnosis is not a diagnosis of ending life and living!”
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