Amyloidosis Support Group of India - ASGI

24/10/2024

Greetings!

On behalf of the Organizing Committee of the Amyloidosis Support Group of India (ASGI), we are pleased to invite you to our upcoming webinar on "Issues, Challenges, and Emerging Solutions to Combat Amyloidosis." complex co

**Event Details:**
- **Date:** 26th October 2024
- **Time:** 7:30 PM to 9:30 PM (IST)
- **Platform: https://meet.google.com/hzi-jrjo-son

Thank you in advance for your time and consideration. We look forward to your presence.

Warm regards,

Organizing Team
Amyloidosis Support Group of India (ASGI)
New Delhi, India
RSVP:info@amyloidosissupport.in

🙏

19/09/2024

Dear Respected Members and Wellwishers of ASGI:

It is with immense gratitude and a sense of historic significance that we express our heartfelt thanks to the Director General of Health Services (DGHS) and the Government of India for their prompt attention to the timely appeal regarding the policy development for Amyloidosis management in the country.
1. The recent approval of the minutes of the discussions held on September 6th, 2024, marks a significant milestone in the healthcare landscape of India.

2. We extend our deepest appreciation to the Honorable Prime Minister, the Ministry of Health and Family Welfare, and the entire DGHS team for recognizing the urgent need for a dedicated policy framework for Amyloidosis. 3. The decision to designate the National Centre for Disease Control under DGHS as a pivotal player in the registry of Amyloidosis cases, is comparable with any registry-led Policy options.
3. The mentioning of the allocation of resources for medication procurement for the treatment is remarkable.
4. Priority attached to research by ICMR, signifies a groundbreaking approach towards addressing the complex medical challenges posed due to Amyloidosis
5. We are truly touched by the comprehensive approach outlined by the government, which embraces a multidisciplinary and integrated strategy involving traditional medicine practices. The approach shall be an enabler in setting up large numbers of Centres of Excellence for Amyloidosis Treatment and Management
6. The commitment shown by the Government, towards this endeavour, is commendable, and we are honoured to be part of this transformative journey in ameliorating Amyloidosis.
7. As we stand on the brink of implementing these vital decisions, we pledge our unwavering support and dedication to ensuring the success of this initiative.
8. The support and collaboration of all members and stakeholders of ASGI are crucial as we embark on this collective endeavour.

With profound gratitude and warm regards to all involved, we look forward to the positive impact that this collaboration will bring to the management of Amyloidosis in India.
With Gratitude,

Satish Chandra 🙏
Satish Chandra

07/08/2024

https://x.com/princeamitabh/status/1820787360683962616?s=48&t=siHwt6oz7HodcQIPsbgCDQ

12/07/2024

Urgent: Please Fill Out the ASGI Patient and Caregiver Questionnaire

Dear ASGI Members,

I hope this message finds you well.

We need your help to improve our support services and better understand the needs of our community. Please take a few minutes to fill out our Patient and Caregiver Questionnaire. Your participation is crucial and will significantly aid us in our efforts to support and manage Amyloidosis more effectively.

Survey Form: Patient and Caregiver Questionnaire
https://forms.gle/gJJ57EWzDTZgAp5X8

Additionally, the recording of our recent webinar on Amyloidosis Awareness is now available. You can watch it here: https://youtu.be/NaIxwcsxCfI?si=3BVneJ6Jw8yEhsCx
Thank you for your time and cooperation. Your input is invaluable to us.

Thank you for participating in our AL Amyloidosis Patient Information Questionnaire. The data collected will be used to better understand the epidemiology, treatment success, and patient/caregiver experiences for AL Amyloidosis in India. Your participation is voluntary, and all information will be k...

22/06/2024

FAQ on AL Amyloidosis

What is AL Amyloidosis?
AL Amyloidosis is a rare disease caused by the buildup of abnormal protein deposits, known as amyloid, in various tissues and organs. These deposits can affect the normal function of the heart, kidneys, liver, spleen, and nervous system.

How is AL Amyloidosis diagnosed?
Diagnosis typically involves several tests, including blood and urine tests, biopsies, and imaging studies such as echocardiograms, MRIs, and PET scans. These tests help determine the extent and impact of amyloid deposits in the body.

What do VCD and NTproBNP levels indicate in AL Amyloidosis?
VCD refers to a combination therapy of Velcade (bortezomib), Cyclophosphamide, and Dexamethasone used to treat AL Amyloidosis. NTproBNP is a marker of heart strain used to evaluate cardiac function. Changes in these levels can indicate the effectiveness of treatment and the progression of the disease.

What does a reduction in NTproBNP levels mean?
A decrease in NTproBNP levels suggests improved cardiac function and a positive response to treatment. However, sudden increases may indicate new or worsening heart issues requiring further investigation.

What does the Lambda light chain measurement signify?
Lambda light chains are a component of the abnormal proteins involved in AL Amyloidosis. A decrease in plasma levels indicates a response to combinatorial treatment involving chemotherapy, immunotherapy, and steroids.

What additional tests are planned for monitoring AL Amyloidosis?
Further assessments of cardiac health include Strain Echocardiography, Cardiac MRI, and PET scans. These tests help understand the heart's condition and check for progression or regression of amyloid deposits.

What role do healthcare settings and multidisciplinary teams play?
Leading hospitals in India are striving through a multidisciplinary approach involving hematologists, cardiologists, nephrologists, and other specialists to find sustainable solutions for the patients of Amyloidosis.
Notable Medical Establishments /institutions provide comprehensive care and expertise.

How important is the support from patient groups and caregivers?
Patient groups, caregivers, and platforms like IMAGe in India are vital in promoting awareness about issues and challenges around Amyloidosis. They provide emotional support, share experiences, offer resources, and facilitate quick wins in managing the disease.

What is the focus of ongoing treatment patterns in India?
Ongoing treatment includes adherence to recommended chemotherapy cycles (e.g., VCD), ASCT, Replication of the novel treatment regimens being adopted across the globe, regular monitoring, and further investigations to ensure optimal management of AL Amyloidosis.

How does patient determination impact the management of AL Amyloidosis?
A patient’s commitment to understanding and managing their condition, alongside following medical advice, significantly aids in navigating the complex journey towards better health. With growing focus and deepened engagement of stakeholders, it might bring lots of hope for Amyloidosis patients and caregivers shortly.!!

22/06/2024

https://my.clevelandclinic.org/health/diseases/4059-constipation -and-treatment

Find out why you’re backed up and how to relieve the problem.

22/06/2024

https://medicaldialogues.in/contact/

Contact us at Medical Dialogues

22/06/2024

Synopsis on Public Awareness on Amyloidosis as Rarediseases in India:
The Amyloidosis Support Group of India (ASGI), an initiative of NGO,RDSSDF- committed to fighting amyloidosis, has launched various awareness campaigns aligned with Sustainable Development Goals (SDG) 2030, especially SDG 3 focusing on health.

Amyloidosis, a rare and often misdiagnosed condition, requires increased awareness and education for better patient outcomes. ASGI's activities include community outreach, workshops, and partnerships with healthcare institutions to raise awareness, promote early diagnosis, and provide support to patients and families.

By leveraging different media platforms, ASGI aims to educate the public and reduce stigma around amyloidosis.

Their efforts align with SDG 3's goals of improving health and well-being, reducing mortality, and enhancing life quality for individuals with rare diseases.

Through collaborations and advocacy, ASGI is actively contributing to the national health agenda and ensuring inclusivity in achieving a healthier future.

22/06/2024

https://x.com/schandra2023/status/1804478484598735045

23/05/2024

Q: Can you share your experience with the attacks of severe shortness of breath in advanced cardiac amyloidosis?
A: The attacks of severe shortness of breath in advanced cardiac amyloidosis can be overwhelming and unpredictable. They can occur suddenly and subside just as quickly, making it challenging to anticipate when they may happen. These episodes can be triggered by various factors such as exertion, dietary choices, or medication adjustments like diuretics. It's a constant challenge for both the patient and their caregivers to stay vigilant and try to identify potential triggers.

Q: How do you cope with the uncertainty of not knowing what to look out for when experiencing these episodes of shortness of breath?
A: Dealing with the uncertainty of not knowing what triggers the shortness of breath episodes can be incredibly frustrating. It requires a high level of vigilance and awareness of your body's responses to different situations. Keeping a symptom journal and tracking the circumstances surrounding each episode may help identify patterns or triggers. It's also essential to communicate openly with your healthcare team about these experiences to explore possible strategies for managing and preventing such episodes.

Q: Can you elaborate on the symptoms and challenges you faced with h-attr amyloidosis, including autonomic neuropathy, gastrointestinal issues, and muscle wasting?
A: H-ATTR amyloidosis can present a wide range of symptoms and challenges, including autonomic neuropathy, gastrointestinal issues, and muscle wasting. The combination of symptoms like carpal tunnel syndrome, dizziness, shortness of breath, and uncontrollable bowel symptoms can significantly impact daily life and quality of life. Muscle wasting leading to weight loss and loss of muscle mass can further exacerbate physical strain and emotional distress. Managing these symptoms often requires a multidisciplinary approach involving healthcare professionals specializing in various areas to address the holistic needs of the patient.

Q: How did you navigate the diagnosis process for h-attr amyloidosis, considering the rarity of the disease and the lack of awareness among healthcare providers?
A: Navigating the diagnosis process for h-attr amyloidosis can be a long and challenging journey, especially considering the rarity of the disease and the lack of awareness among healthcare providers. Misdiagnosis or delayed diagnosis is not uncommon in such cases, leading to frustration and confusion for patients and their families. Seeking out medical professionals experienced in diagnosing and managing amyloidosis, and advocating for comprehensive testing and evaluation can help expedite the diagnostic process. Building a support network and connecting with patient advocacy groups can also provide valuable resources and guidance throughout the diagnosis and treatment journey.

Q: How has finding this supportive online community impacted your journey with h-attr amyloidosis, and how do you suggest others cope with the feelings of isolation and uncertainty?
A: Discovering a supportive online community of individuals sharing similar experiences with h-attr amyloidosis can be a significant source of comfort and empowerment. Connecting with others who understand the challenges and emotions associated with the disease can help combat feelings of isolation and provide a sense of belonging and understanding. Sharing knowledge, offering support, and exchanging experiences within such a community can foster a sense of unity and resilience. For those struggling with feelings of isolation and uncertainty, reaching out to patient support groups, engaging in online forums, and connecting with peers facing similar circumstances can offer valuable emotional support and practical insights. Remember, you are not alone in this journey, and support is available.

17/05/2024

Novel Treatment Regimens emerging to address the challenges owing to AL Amyloidosis:

In cases where traditional treatment options such as the Andromeda Protocol, ASCT (autologous stem cell transplantation), or combinations of chemotherapy and immunotherapy with Dexa methadone are not effective in achieving complete remission for AL amyloidosis, alternative therapies such as CAR-T cell therapy, BCMA-targeted therapies, CAEL-101, and other drugs in clinical trials may be considered.

CAR-T cell therapy involves collecting a patient's T cells and modifying them in a laboratory to express a chimeric antigen receptor (CAR) that targets a specific protein on the surface of cancer cells. These modified T cells are then infused into the patient to target and kill the cancer cells. CAR-T cell therapy has shown promising results in treating certain types of blood cancers and is being investigated in clinical trials for AL amyloidosis.

BCMA (B-cell maturation antigen) is a protein that is expressed on the surface of multiple myeloma cells, which can also be present in AL amyloidosis. BCMA-targeted therapies, such as antibody-drug conjugates or bispecific T cell engagers, are designed to target and kill cancer cells that express BCMA. These therapies are being studied in clinical trials for AL amyloidosis and have shown potential in treating BCMA-positive cancers.

CAEL-101 is an investigational therapy for AL amyloidosis that targets misfolded light chain proteins, a disease hallmark. CAEL-101 is a first-in-class amyloid fibril-reactive monoclonal antibody that binds to these misfolded proteins, leading to their clearance from the body. Clinical trials have shown promising results for CAEL-101 in treating AL amyloidosis, and it has the potential to be a targeted and effective treatment option for patients who have not responded to traditional therapies.

It is important to note that the approval status of these alternative therapies for AL amyloidosis may vary depending on the country and regulatory agency overseeing drug approvals. Clinical trials are ongoing to evaluate the safety and efficacy of these therapies, and they may not yet be widely available for use outside of research settings.

Patients with AL amyloidosis who have not responded to standard treatments should discuss with their healthcare providers about potential alternative therapies, including participation in clinical trials that are investigating novel treatment options. Healthcare providers can help determine the most appropriate treatment approach based on the patient's disease characteristics, treatment history, and overall health status.

02/04/2024

Positivity towards Treatment and understanding of the Rarediseases- Amyloidosis, in India :

Indian doctors in India have shown remarkable dedication in the fight against Amyloidosis. While support from non-native doctors may have been lacking initially, many are now actively involved in raising awareness and forming alliances to find solutions for treating this disease. Collaboration and open communication among experts, healthcare professionals, patients, caregivers, and advocacy groups are essential for progress in addressing Amyloidosis. Engaging in constructive dialogues with experts, listening to feedback, and advocating for resources can greatly enhance treatment options for those affected in India. Let's remain committed and continue working towards making a positive impact in the battle against Amyloidosis. Best regards, ASGI 🙏