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Receiving an amyloidosis diagnosis can feel overwhelming, but you are not alone. Whether you are a patient seeking treatment options, a caregiver looking for guidance, or a family member trying to understand the next steps, we are here to help. This page provides a clear, step-by-step roadmap to navigate diagnosis, treatment, and ongoing care. From finding the right specialists to understanding available treatments and accessing support networks, we aim to empower you with the knowledge and resources needed for this journey. Let’s take the next step together.

Navigating Amyloidosis​

  1. A Roadmap for Newly Diagnosed Patients.
  2. Roadmap for family Members and Caregiver of Amyloidosis Pateints

A Roadmap for Newly Diagnosed Patients​

Phase 1 :

Understanding & Accepting Amyloidosis

A: Acknowledge the Diagnosis

  1. Amyloidosis is rare, but support and treatment options exist.
  2. Seek trustworthy medical guidance.

B: Learn About Amyloidosis:

  1. Learn about Amyloidosis
  2. Understand what type of amyloidosis your loved one has (AL, ATTR, AA, etc.).
  3. Learn which organs are affected and what symptoms to expect.
  4. Get reliable information from medical professionals, support groups, and trusted websites.

C: Build Your Support System:

  1. Seek support from family members or friends
  2. Find an amyloidosis specialist—not all doctors are experts in this disease.
  3. Join a patient support group: Amyloidosis Support Groups of India, Amyloidosis Foundation, IMAGe-India, etc
  4. Consider speaking to a counsellor or therapist if anxiety feels overwhelming.

Phase 2 :

Understanding Your Specific Diagnosis & Treatment Pathway

A: Confirm & Understand Your Diagnosis

  1. Confirm your diagnosis based on various test and doctors guidance
  •  Blood & Urine Tests – Detect abnormal protein levels.
  • Bone Marrow Biopsy (for AL Amyloidosis).
  • Tissue Biopsy – Confirms amyloid deposits.
  • Cardiac MRI / Echocardiogram (if heart involvement is suspected).
  • Genetic Testing – If hereditary ATTR amyloidosis is suspected.

       2. Go for a second opinion

B. Identify Doctors and Available Treatment Based on Diagnosis

  1. Identify a medical practionars with experience in amyloidosis: Know Amyloidosis specialist (haematologist, cardiologist, nephrologist, etc.).
  2. Identifying Hospitals: Research and identify Hospitals that provide specialised Amyloidosis treatment with latest technology.
  3. Identify treatment options

Phase 3 :

Creating a Personalised Treatment Strategy

A: Discuss & Decide on a Treatment Approach

  1. Treatment will depend on your type of amyloidosis:

AL Amyloidosis (Light Chain)

  • Chemotherapy (Daratumumab, Bortezomib, etc.).
  • Stem cell transplant (in eligible patients).

       ATTR Amyloidosis (Transthyretin)

  • Tafamidis (Vyndaqel) for stabilizing transthyretin protein.
  • Patisiran, Inotersen for reducing amyloid buildup.
  • Heart or liver transplant (in some cases).

       AA Amyloidosis

  • Treating the underlying inflammatory disease.

       Localised Amyloidosis

  • Surgery or localised treatments.

Key Questions to Ask the Doctor:

What are the risks and benefits of this treatment?

Will I need long-term medication or follow-up?

What are my alternative options?

B: Assemble the Right Team

  1. You will need multiple specialists based on the affected organs:
  • Hematologist – If AL Amyloidosis (linked to abnormal plasma cells).
  • Cardiologist – If the heart is affected.
  • Nephrologist – If the kidneys are involved.
  • Neurologist – If nerve damage is present.
  • Gastroenterologist – If the digestive system is affected.

       2. Build Primary Care Team:

  • Based on diagnosis and specific treatment Identify the main physician(s) responsible for treatment & who will moderate the overall process & health.

       3. Specialist Support:

  • Ensure the involvement of relevant specialists depending on the organs affected.

       4. Second opinion: 

  • Ask about second opinions to confirm treatment options.

       5. Mental health Support (Support Groups & Counselling):

  • Contact us ASGI (Amyloidosis support group of India) for all kind of support.
  • Consider engaging a counsellor or therapist for both the patient and family members.

C. Develop a Treatment Roadmap​

  1. Create a treatment Plan:
  • Ensure that the treatment plan is clearly outlined (Which will be a ongoing process).
  • Understand the roles of various specialists (haematologists, cardiologists, nephrologists, etc.).
  • Understand & identify the specialist patient require.
  • Schedule appointments, medicine and keep track of tests.

       2. Document the Process:

  • Keep a binder or digital file with all medical records, test results, appointment schedules, and treatment plans.
  • Take notes on medical advice & treatment options.
  • Keep a daily Journal to document the progress, symptoms, medication etc.

Phase 4 :

Financial & Logistical Planning

A: Manage Costs & Find Resources

  1. Amyloidosis treatment can be expensive, but help is available.
  • Check your insurance coverage for medication and hospital visits.
  • Explore clinical trials that provide free or subsidised treatment.
  • Ask hospitals about instalment payment plans.

       2. Make a financial plan early to avoid stress later.

Phase 5 :

Lifestyle Adjustments & Emotional Well-Being

A: Nutrition & Daily Care

  1. Diet Matters
  • Eat clean & protein-rich foods (unless kidneys are affected: then consult your doctor).
  • Stay hydrated but monitor fluid intake if you have heart involvement.
  • Limit processed foods and excess salt to reduce strain on the heart and kidneys.

       ATTR Amyloidosis (Transthyretin)

B: Manage Side Effects & Symptoms

  1. Common symptoms & how to manage them:
  • Fatigue : Rest, light exercise, and proper hydration.
  • Swelling (Edema) : Reduce salt, wear compression socks.
  • Neuropathy (Nerve pain/tingling) : Ask about medications for nerve pain relief.
  • Breathing Issues : Use breathing exercises and consult a pulmonologist if needed.

       2. Your body will need adjustments: be patient with yourself.

C: Emotional & Mental Well-being

  1. Amyloidosis can feel isolating—prioritise mental health!
  • Talk to a counsellor or therapist if you feel overwhelmed.
  • Join ASGI via whatsaap for connection & guidance.
  • Practice stress management techniques like yoga, meditation, or journaling.

Phase 6 :

Long-Term Monitoring & Future Planning

A: Stay on Top of Follow-Ups & Adjustments

  1. Create a regular check-up schedule with your doctor.
  • Blood work every 3-6 months to monitor treatment progress.
  • Organ function tests (Heart MRI, kidney function tests, etc.).
  • Adjust treatment plans based on response and side effects.

      2. Regularly update yours journal on ongoing treatments, symptoms, impacts, side effect,

B: Explore New Treatment Options

  1. Amyloidosis research is advancing—stay informed about:
  • Clinical trials (new drugs and therapies).
  • Gene therapy (for hereditary forms).
  • Advancements in targeted treatments.

      2. Ask your doctor if you qualify for any newer treatments.

You are nor alone. We are here to help you

Join Our WhatsApp Group
Share your concern’s via Email

Roadmap for Family Members and Caregivers of Amyloidosis Patients

Phase 1:

Understand the Diagnosis & Treatment

A: Understand Amyloidosis and its impact

  1. Learn About Amyloidosis:
  • Study Amyloidosis
  • Understand what type of amyloidosis your loved one has (AL, ATTR, AA, etc.).
  • Learn which organs are affected and what symptoms to expect.
  • Get reliable information from medical professionals, support groups, and trusted websites.

       2. Attend Medical Appointments:

  • Join discussions with doctors and specialists to gain clarity on the diagnosis, treatment options, and prognosis.

       3. Create a List of Questions:

  • What specific tests were done and what do they indicate?
  • What treatments are recommended and why?
  • What are the potential side effects and long-term implications?

B. Identify Doctors and Available Treatment

  1. Identify a medical practitioners with experience in amyloidosis: Know Amyloidosis specialist (haematologist, cardiologist, nephrologist, etc.).
  2. Identifying Hospitals: Research and identify Hospitals that provide specialised Amyloidosis treatment with latest technology.
  3. Identify treatment options

C. Develop a Treatment Roadmap

  1. Create a treatment Plan:
  • Ensure that the patient’s treatment plan is clearly outlined (Which will be a ongoing process).
  • Understand the roles of various specialists (haematologists, cardiologists, nephrologists, etc.).
  • Understand & identify the specialist patient require.
  • Help schedule appointments and keep track of tests.

       2. Document the Process:

  • Keep a binder or digital file with all medical records, test results, appointment schedules, and treatment plans.
  • Take notes on medical advice & treatment options.
  • Keep a daily Journal to document the progress, symptoms, medication etc.

Phase 2:

Build a medical team & Strong Support Network​

A: Assemble the Right Team

  1. Build Primary Care Team: Identify the main physician(s) responsible for patient’s care & who will moderate the overall treatment & health.
  2. Specialist Support: Ensure the involvement of relevant specialists depending on the organs affected.
  3. Second opinion: Ask about second opinions to confirm treatment options.
  4. Mental health Support (Support Groups & Counselling):
  • Contact us ASGI (Amyloidosis support group of India) for all kind of support.
  • Consider engaging a counsellor or therapist for both the patient and family members.

B: Managing Treatment & Side Effect:

  1. Start the Treatment: Start the treatment, follow doctor’s instructions, rules and regulation and follow the treatment plan.
  2. Understand the treatment’s side effects and take the necessary precautions accordingly.

C: Communication & Coordination

  1. Attend doctor appointments :
  • Take notes on medical advice and treatment options.
  • Ask questions—clarify medications, procedures, and prognosis.

       2. Regular Family Meetings: Schedule meetings to discuss the patient’s progress, upcoming appointments, and

           any concerns.

       3. Assign Roles: Delegate tasks among family members (e.g., managing finances, coordinating transportation,         

           keeping track of medications).

Phase 3:

Manage Daily Life & Emotional Well-Being

Step 1:

Emotional Support for the Patient

  1. Active Listening: Create an open environment for your loved one to express fears, concerns, and hopes.
  2. Encouragement & Positivity: Reinforce the notion that they are not alone and that treatment is a journey tackled one step at a time.
  3. Engage in Enjoyable Activities: Help schedule activities that bring joy and reduce stress, even if they are low-key.

Step 2:

Caregiver Self-Care

  1. Recognise Your Own Needs: Acknowledge that caregiving can be emotionally and physically draining.
  2. Schedule Personal Time: Carve out time for exercise, hobbies, or simply relaxation.
  3. Seek Professional Help: Consider joining caregiver support groups or speaking with a therapist to manage stress and prevent burnout.

Phase 4:

Address Financial & Logistical Considerations​

  1. Financial Planning
  • Insurance & Coverage: Review the patient’s insurance benefits to understand what treatments, medications, and hospital stays are covered.
  • Explore Assistance Programs: Research financial aid from non-profits, government agencies, or pharmaceutical assistance programs.
  • Budgeting: Develop a budget that accounts for both routine and unexpected medical expenses.

       2. Daily Logistics

  • Transportation: Organise a schedule for getting to and from medical appointments.
  • Medication Management: Use tools like pill organisers, calendars, or smartphone apps to track medications and doses.
  • Document Organisation: Maintain a dedicated file for all medical records, contact information of healthcare providers, and appointment details.

Phase 5:

Long-Term Planning & Adaptability​

  1. Long-Term Planning & Adaptability
  • Regular Follow-Ups: Encourage the patient to attend all scheduled check-ups and monitor any changes in symptoms.
  • Adjust Treatment Plans: Be prepared to adapt the care plan based on feedback from medical professionals and the patient’s response to treatment.

       2. Stay Informed

  • Ongoing Education: Keep updated on new research, treatment options, and clinical trials related to amyloidosis.
  • Engage with the Community: Participate in educational events or webinars that provide the latest information on managing the condition.

Phase 6:

Final Thoughts: A Team Approach to Healing​

  1. Remember, You’re Not Alone: Every member of the family plays a crucial role in the patient’s journey. Collaboration, clear communication, and mutual support are key.
  2. Maintain Hope & Resilience: Celebrate small victories along the way and remind everyone that progress, even if slow, is a step forward.
  3. Adaptability is Key: The roadmap is expandable. As treatment progresses or circumstances change, revisit and revise plans to suit new needs.

You are nor alone. We are here to help you

Join Our WhatsApp Group
Share your concern’s via Email
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