WORLD BRAIN TUMOUR DAY
Brain Tumour Support Groups in India: A Lifeline for Patients and Families
Written by:
Anoushka Pinto
Every year, on June 8th, the world comes together to observe World Brain Tumour Day, a day dedicated to raising awareness about brain tumours and supporting those affected by this challenging disease. As we approach this significant day, it’s crucial to recognize the vital role that brain tumour support groups play in providing comfort, guidance, and solidarity to patients, caregivers, and families facing the journey of a brain tumour diagnosis.
What is a brain tumour?
A brain tumour is an abnormal growth of cells in the brain or the tissues surrounding it. These growths can be either benign (not cancerous) or malignant (cancerous). They can start right in the brain or spread there from other parts of the body.
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Brain tumour support is all about helping out people affected by brain tumours. That includes patients, survivors, caregivers, and families. There are different kinds of support available, like emotional support, practical help, sharing information, and building a community. Support groups for brain tumour patients are a big part of this whole setup. They give people a chance to connect, share experiences, and find strength in each other.
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Why would someone join a brain tumour support group?
here are a few good reasons why someone would seek to join a brain tumour support group:
Emotional support
Getting diagnosed with a brain tumour can be super overwhelming and scary. Support groups give you a safe space to let it all out, express your feelings, and know you’re not alone.
Shared experiences
In a support group, you can swap stories, share coping strategies, and dish out practical advice with others who may be affected by brain tumour.
Information and resources
Support groups are a goldmine of information about treatments, side effects, and the latest in medical research. You can learn from others’ experiences and get insights that your healthcare providers might not have.
Practical tips
Dealing with a brain tumour can get pretty complicated, with lots of medical and logistical stuff to handle. Support groups can give you practical tips on managing symptoms, navigating the healthcare system, and finding financial or legal assistance.
Empowerment and hope
Support groups give you hope and a sense of strength. They remind you that you’ve got what it takes to take charge of your treatment and recovery.
Support for caregivers
Caregivers of brain tumour patients have their own unique challenges, and support groups give them a place to connect, get support, and learn self-care strategies.
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Brain Tumour Support Groups
1. Brain Tumour Foundation of India
About
Activities
When
Contact
About
The Brain Tumour Foundation of India is dedicated to providing comprehensive support to individuals affected by brain tumours. Through monthly meetings and a range of activities, the foundation aims to address the multifaceted needs of patients and their families, offering guidance, counselling, and recreational activities to enhance their quality of life.
Activities
- Counselling Sessions: Professional psychologists from the institute offer counselling services to patients, helping them navigate the emotional challenges of their condition.
- Dietary Guidance: Dieticians provide valuable information on proper nutrition and diet tailored specifically for brain tumour patients.
- Occupational Therapy: Occupational therapists discuss the importance of maintaining independence in daily activities and the significance of regular exercise.
- Radiation Information: Radiation oncologists share critical information about radiation therapy and its potential side effects, helping patients make informed decisions about their treatment.
- Social Support: Social workers assist financially needy and underprivileged patients by providing essential guidance and support.
Special Events: In collaboration with other organisations, the Brain Tumour Foundation organises various events such as magic shows, lunches, picnics, programs, and competitions specifically designed for children with brain tumours. These activities provide a much-needed break and joy for young patients and their families.
When
The foundation holds its meetings on the first Tuesday of every month, where they discuss important issues and topics with specialised professionals.
Contact
Address: 1129, 11th Floor, Homi Bhabha Block, Tata Memorial Centre, Dr. Ernest Borges Road, Parel, Mumbai – 400 012.
Telephone: +91-22-2417 7000
Email: btf@braintumorfoundation.in
Website: https://braintumorfoundation.in/BTF_support_network_meeting.html
2. BTSG Awareness Foundation
About
Activities
When
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About
The Brain Tumour Support Group (BTSG) Awareness Foundation is dedicated to supporting individuals affected by brain tumours and their caregivers. Recognizing the significant impact brain tumours can have on patients’ lives, BTSG focuses not only on treatment but also on addressing various psychosocial issues. With over 120 types of brain tumours, BTSG aims to help patients navigate their diagnosis and treatment journey, connect with experts, express their feelings, and stay informed about new treatments and clinical trials.
Objectives
- Awareness: Raise community awareness about brain cancer.
- Support at Diagnosis: Provide assistance with special tests and diagnosis.
- Treatment Support: Offer support throughout the treatment process.
- Caregiver Support: Provide respite care and support for caregivers.
- Rehabilitation and Survivorship: Assist with post-treatment rehabilitation and survivorship.
Activities
- Knowledge Sharing: Empower patients with information about brain tumors, including clinical trials in India and abroad, and recommendations for centers of excellence.
- Financial Support: Assist with the costs of diagnosis and molecular testing.
- Logistical Support: Help with finding doctors, reaching hospitals, navigating the healthcare system, obtaining second opinions, and managing post-operative care and therapy (chemotherapy, radiation, surgery).
- Life Advice: Provide guidance on returning to school, college, or work, as well as advice on marriage and parenthood.
- Hormone Support: Offer growth hormone support to teenagers and young adults with pituitary and other brain tumors.
- Community Engagement: Organize roadshows, flash mobs, marathons, and fundraising events. Engage with celebrities and corporates to promote social entrepreneurship.
- Advocacy: Work with educators, employers, insurance companies, government, and social groups to ensure brain cancer patients receive non-discriminatory treatment.
- Collaboration: Partner with healthcare professionals for record-keeping and brain cancer registries. Collaborate with other national groups to enhance research quality.
- Fundraising: Raise funds to support all the objectives and adapt to new needs as they arise.
When
The BTSG Awareness Foundation holds monthly support group meetings for patients and caregivers. These sessions are free and open to all patients and caregivers. To join, email them or call them on their contact number. Please share your latest medical records, nature of illness, and biopsy report.
Contact
For more information or to join the support group meetings, please contact:
Addres: South City Enclave, V-2, Raghunath Nagar, Rohit Nagar, Bawadiya Kalan, Gulmohar Colony, Bhopal – 462 039.
Email: btsgfoundation@gmail.com
Phone: 7880083005
Wesbite: https://btsgfoundation.in/
3. CONNECT - Gleneagles Hospitals
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About
Gleneagles HealthCity hosts a brain tumour support group called ‘CONNECT.’ This platform is designed for brain tumour patients to share experiences, ideas, and provide emotional support. Additionally, ‘CONNECT’ aims to raise awareness among general physicians and caregivers about available management protocols for brain tumours.
Activities
- Sharing experiences and ideas among brain tumour patients
- Providing emotional and moral support
- Spreading awareness about brain tumour management
- Involving counsellors, social workers, and healthcare professionals to assist patients and their families
- Facilitating interactions between newly diagnosed patients and those who have undergone treatment
When
Meetings are planned at 3-month intervals and are free for all to attend.
Contact
For further queries or to enrol a loved one in the Neuro Tumour Support Group, contact: +91 98406 07494
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4. Glioblastoma Support India (Online)
About
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About
Glioblastoma is one of the most aggressive and challenging forms of cancer, impacting the quality of life for patients and their families profoundly. Glioblastoma Support India is a Facebook group dedicated to those affected by glioblastoma in India, providing a community of support and understanding. Managed by a neuro-oncosurgeon, the group offers a platform for sharing experiences and mutual encouragement. However, it’s important to note that any statements made within the group are not professional medical advice and should not be used for medico-legal purposes.
Activities
Members of the group engage in sharing personal stories, offering emotional support, and discussing coping strategies. The group also provides updates on the latest research, treatment options, and helpful resources. Occasionally, virtual meetings and webinars are organised to connect members and provide expert insights on glioblastoma care and management.
When
The group is active year-round, with continuous discussions and interactions. Virtual meetings and webinars are announced within the group, providing opportunities for live engagement and support.
Contact
For more information, you can directly message the group administrators through the Facebook group.
To join the Glioblastoma Support India group, visit their Facebook page at Glioblastoma Support India.
5. The Brain Tumour Charity (Online, UK)
About
Activities
Facebook support groups
Instagram support groups
Contact
About
The Brain Tumour Charity, while based in the UK, offers invaluable support to individuals worldwide, including those in India. Their online brain tumour support groups provide a safe and welcoming space for those affected by brain tumours. Whether you are living with a brain tumour or supporting someone who is, you will find a compassionate community of people who understand your journey.
Activities
In these online support groups, members can:
- Connect with others who have similar experiences
- Ask questions and receive support from peers
- Share personal experiences and stories
- Access the group at any time, day or night
- Explore and discuss various treatment options
- Gain insights and advice from a diverse group of members
Facebook support groups
- General Brain Tumour Support Group: A supportive community for anyone affected by a brain tumour diagnosis.
- Living with a Brain Tumour Diagnosis Group: A dedicated space for individuals diagnosed with any type of brain tumour.
- Carers Support Group: For those providing care to someone living with or recovering from a brain tumour.
- Parents Support Group: A group for parents of children under 18 who are living with or recovering from a brain tumour.
- Young Adults Support Group: For individuals aged 16-30 who are living with or have been diagnosed with a brain tumour.
- Young Adult Carers Group: For young adults aged 16-30 who are caring for a loved one with a brain tumour diagnosis.
- Meningioma Community Group: A dedicated group for those affected by meningioma, providing specific support and information.
Instagram support groups
- Teen Brain Tumour Support Group: For teenagers aged 13-17 living with or recovering from a brain tumour diagnosis.
- Teen Sibling Support Group: For teenagers aged 13-17 who have a sibling living with or recovering from a brain tumour diagnosis.
Contact
For more information or to join the support group, you can contact:
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Benefits of brain tumour support groups
Emotional support from others helps patients cope with their disease:
Support groups are linked to better treatment tolerance and compliance
Eases the pressure of facing a brain tumour diagnosis alone
Offers a platform for interaction between cured, existing, and newly diagnosed patients
Provides meaningful support and answers to doubts and fears
Includes counsellors, social workers, and healthcare professionals to strengthen patient support
Brain tumours are a significant global health concern, affecting people of all ages and backgrounds. They can have profound effects on physical and cognitive function, quality of life, and overall well-being. Despite advancements in medical science, brain tumours remain among the most challenging forms of cancer to treat, with limited treatment options and often devastating outcomes.
By participating in the support groups highlighted above, individuals impacted by brain tumours can find a community of understanding and strength, offering a vital source of support throughout their journey.
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