Ms Uruj Anjum, Psychotherapeutic Counsellor, MBACP, Msc | 09/10/2024
Since joining The Maypole Project in 2021, I've had the privilege of working with individuals and families facing complex medical needs and providing online counselling to clients impacted by a genetic diagnosis. The Maypole Project is a vital resource, providing counselling and therapy to help people navigate through difficult times. One of the most rewarding aspects of my work has been supporting young adults diagnosed with Bardet-Biedl Syndrome (BBS).
Understanding Bardet-Biedl Syndrome
Bardet-Biedl Syndrome (BBS)Â is a rare, inherited genetic disorder that impacts multiple body systems, including the eyes, kidneys, and genitals. As of November 2023, Bardet-Biedl syndrome (BBS) is estimated to affect around 600Â people in the UK. This syndrome is a mosaic of challenges, each piece unique to the individual affected. The complexity of BBS requires a deep understanding and compassionate approach to care.
Primary Symptoms
Visual Impairment:Â Many individuals with BBS experience progressive vision loss, which can lead to significant challenges in daily life. Navigating the world with limited sight demands creativity and resilience.
Obesity:Â This is a common feature and can complicate other health issues, making daily activities and health management more challenging.
Polydactyly:Â Extra fingers or toes are often present at birth, requiring early medical intervention and adaptation.
Learning Disabilities:Â These can vary widely in severity among individuals, affecting academic performance and social interactions.
Underdeveloped Genitals in Males:Â This can lead to hormonal and fertility issues, impacting self-esteem and future planning.
Secondary Symptoms
Delayed Development and Speech Problems:Â These can affect educational progress and social interactions, necessitating specialized educational support.
Poor Coordination and Clumsiness:Â Often leading to challenges in physical activities, requiring patience and tailored physical therapy.
Type 2 Diabetes:Â As a result of obesity and other metabolic factors, this adds another layer of complexity to daily management.
Ataxia:Â Difficulty controlling muscles can lead to movement disorders, demanding careful therapeutic interventions.
Inheritance and Management
BBS is inherited in an autosomal recessive manner, meaning both parents carry the gene change for a child to be affected. There's no treatment for the cause of BBS, but multidisciplinary care can help treat the disease's manifestations. Management focuses on early detection, complication screening, and genetic counseling. While surgical intervention may be required for anatomical abnormalities, there's no role for surgery in retinal degeneration.
My Experiences Working with BBS Clients
I have extensive experience in providing online counselling for genetic diagnoses. Working with adult clients who have BBS has been both challenging and deeply rewarding. Each client teaches me more about the human spirit's resilience and adaptability. Here are some insights and experiences from my journey:
Online Counselling for Genetic Diagnoses
Due to the visual impairments associated with BBS, I provided remote support through telephone counselling. Although The Maypole Project is renowned for their long term support for clients, for this particular occasion, BBS clients were able to access 6 sessions of short term therapy. This approach allowed clients to access therapy across England. Building a strong rapport over the phone is essential, as it helps to create a safe space for clients to share their thoughts and feelings. This remote format has opened new doors for connection, allowing therapy to integrate into the clients’ lives.
Diverse Presentations and Neurodivergence
Each client with BBS is unique, with different symptoms and spectrum of neurodivergence. This diversity requires a personalized approach to therapy, as no single strategy will work for everyone. I tailored my approach and interventions to each individual's needs, preferences, and hopes, ensuring that they receive the most effective support possible. This tailored approach often involves creativity and innovation, finding new ways to communicate and connect. I adhered to the BACP ethical framework and worked to the best interest of each client.
Addressing Loneliness and Isolation
A common theme among my clients is the experience of loneliness and isolation. The rarity of BBS means that affected individuals often feel misunderstood or left out. This feeling has been exacerbated by the COVID-19 pandemic, which disrupted social interactions and support networks. Through our sessions, I supported clients to build resilience and find ways to connect with others, both within and outside their immediate circles. Encouraging participation in community groups and online forums has been instrumental in alleviating feelings of isolation. The Maypole Project also organised peer support groups to engage the clients who were interested.
Navigating Life Transitions
Life transitions, such as moving from school to university or entering the workforce, can be daunting for individuals with BBS. These changes often require new levels of independence and adaptation. I worked with clients to develop strategies for managing these transitions by providing tools and techniques.Â
Embracing Diversity and Cultural Differences
Cultural differences can significantly impact how clients experience and manage their condition. I strive to be culturally sensitive and aware of these differences, ensuring that my approach is respectful and inclusive. This attunement helps foster trust and understanding, creating a supportive atmosphere for all clients. By integrating cultural perspectives into therapy, we honor each client’s background and identity, enriching the therapeutic experience.
Conclusion
Working with clients who have Bardet-Biedl Syndrome is an enriching experience that requires compassion, creativity, and dedication. By providing personalized support and understanding, I aim to empower individuals with BBS to lead fulfilling lives despite their challenges. The journey is not without its obstacles, but the progress and resilience demonstrated by my clients inspire me every day. At The Maypole Project, we are committed to making a positive difference in the lives of those we serve, helping them navigate their unique journeys with strength and hope. At Saiyna Therapy, I am privileged to support clients with a rare genetic diagnosis and their mental health journey.
How can remote counseling via telephone break barriers for clients with visual impairments, and what innovative strategies can enhance their therapeutic experience? Let me know your experiences in the comments.
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