Coping with Huntington’s Disease (HD): From Predictive Testing to Therapy and Support

Ms Uruj Anjum, Founder of Saiyna Therapy

Psychotherapeutic Counsellor, MBACP, MSc

06/09/2025

Ms Uruj Anjum, Founder of Saiyna Therapy

Working with families affected by Huntington’s disease (HD) for more than a decade has been one of the most meaningful and deeply human parts of my professional life.

While HD is often described in clinical terms—a rare, inherited neurodegenerative condition that affects movement, thinking, and mood—these definitions rarely capture the lived experience. Behind every diagnosis is a story: children watching a parent change before their eyes, adults weighing whether to undergo predictive genetic testing, partners quietly grieving the future, and individuals navigating an uncertain road ahead.

My journey with HD began over 10 years ago as a genetic counsellor at St George’s Hospital, London. I worked alongside clinical teams and research trials, experiences that left a lasting imprint and shaped my approach today. These early years ultimately inspired me to create Saiyna Therapy—a small, specialist online counselling practice designed to bring together expertise in genetic counselling, nursing, and psychotherapy under one roof. At Saiyna Therapy, we are a small team with a shared purpose: to offer safe, specialist spaces for people living with uncertainty, loss, and hope. By integrating these professional backgrounds, we are able to provide clients with holistic psychological support for Huntington’s disease that honours both the medical and emotional realities of this journey.

What stands out time and again is the silence, grief, uncertainty, and often secrets that surround this diagnosis. Because Huntington’s is inherited, the grief often begins long before symptoms appear. It is anticipatory, complex, and deeply entwined with family identity.

Over the years, I have supported clients through some of the most challenging choices imaginable—parents worrying about passing HD on to their children, young adults considering predictive testing, and individuals coping with a positive genetic test result. Therapy becomes a rare and safe space where emotions can finally be voiced: guilt, anger, fear, isolation—and also strength, clarity, and resilience.

At Saiyna Therapy, we provide a compassionate, non-judgmental space to explore these experiences. Whether you are:

• Considering predictive genetic testing for Huntington’s disease

• Seeking emotional support after a genetic test result

• Coping with grief counselling for genetic conditions

• Navigating family planning and pregnancy with genetic risk

…our team is here to support you with warmth, care, and understanding.

To anyone touched by Huntington’s disease, please know you are not alone. We also work closely with organisations such as the Huntington’s Disease Association (HDA), whose advocacy and resources provide vital support to families across the UK.

If you are looking for therapy for Huntington’s disease grief, genetic testing, anxiety counselling, or psychological support after a genetic diagnosis, we would be honoured to walk alongside you.

With warmth, Uruj