In this episode of Heme Talks, we are joined by Dr. Sai Jambunathan as she shares her experiences with the diagnosis and management of a rare blood disorder known as AL amyloidosis. As a patient herself, listeners will gain insights into the complex initial workup and what the treatment journey is like for patients with this condition. Our patient advocate episodes highlight the importance of advocacy, community, and shared understanding between patients and their healthcare providers.

Key Takeaways:

1. AL amyloidosis can present without classic symptoms, making early recognition challenging. Dr. Jambunathan's initial symptoms — fatigue, shortness of breath, and night sweats — were subtle and initially attributed to other causes. Clinicians should maintain a broad index of suspicion, as timely diagnosis significantly impacts prognosis.
2. Clear, compassionate communication from the care team makes a meaningful difference for patients and families. From explaining the diagnosis in accessible language to giving family members direct reassurance, Dr. Jambunathan's experience shows how much patients value providers who take the time to communicate honestly, patiently, and with empathy.
3. Community, advocacy, and peer support are powerful tools for patients navigating a rare disease. Dr. Jambunathan found strength through patient support groups, faith communities, and caregivers — and channeled her experience into advocacy, helping pass an AL amyloidosis awareness month in New Jersey. Organizations like the Amyloidosis Research Consortium offer valuable resources for patients and families seeking connection and information.

This podcast episode is supported by Alexion.

Join Dr. Maureen Achebe and Dr. Lauren Merz for an in‑depth exploration of the Absolute Neutrophil Counts (ANC) by Duffy Status project, a multicenter effort to define what “normal” ANC and white blood cell counts (WBC) look like in people with the erythrocyte Duffy null variant. Using data from 23 sites across the United States, the project established Duffy null-specific ANC and WBC reference intervals for both adults and children as well as highlighted how often healthy Duffy null individuals have ANC and WBC that fall below conventional laboratory cutoffs.

The episode unpacks the key findings: in healthy adults with Duffy null status, the ANC reference interval has a lower limit of normal near 1,000/µL, substantially below many institutional “normal” thresholds and far below the traditional neutropenia threshold of 1,500/uL. Similar downward shifts are seen across pediatric age groups with lower limits of normal ranging from 500/uL to 900/uL depending on age category. The faculty discuss how, under current institutional ranges, a sizeable proportion of otherwise healthy Duffy null patients are labeled as neutropenic or leukopenic which often prompts unnecessary workups, referrals, and reduced access to clinical trials or certain medications.

Drs. Merz and Achebe then turn to implementation. They outline how laboratories can develop, verify, and adopt Duffy null-specific reference intervals and practical ways to integrate this information into electronic medical records, decision-support tools, and clinical communication. They also highlight education strategies for clinicians, trainees, and patients to ensure that a low ANC in a Duffy‑null individual is interpreted appropriately and not reflexively pathologized.

Listeners will come away with a clear understanding of new adult and pediatric Duffy null-specific ANC and WBC reference intervals as well as practical steps to implement this data into the healthcare system and clinical practice.

Learning Objectives:

1. Describe how adult and pediatric Duffy null-specific ANC and WBC reference intervals were established and why traditional institutional ranges are inadequate for this population.

2. Understand how to interpret ANC and WBC values in patients with the Duffy null phenotype using the new reference intervals.

3. Identify practical steps for health systems to adopt Duffy null‑specific reference intervals and effectively communicate these changes to colleagues, patients, and learners.

Clinical Pearls:

1. In healthy adults with Duffy null status, the lower limit of normal ANC is 1,000/µL—meaning many healthy individuals are misclassified as neutropenic or abnormal by current standards.

2. The lower limit of normal ANC for Duffy null children ranges from 500-900/uL with approximately a third of children with ANC <1500/uL.

3. Implementation of Duffy null-specific infrastructure depends on coordinated efforts with a multidisciplinary team including transfusion medicine, clinical pathology, hematology, EMR IT, health equity specialists, medical educators, and patient advocates.

Multiple myeloma care is evolving faster than ever, with new therapies, treatment strategies, and possibilities emerging at an unprecedented pace. In this episode, hematologist Dr. Devarakonda and Kathy Giusti, founder of the Multiple Myeloma Research Foundation, come together for a candid, practical conversation about what this rapid progress means for patients, caregivers, and providers.

They explore why where you’re treated matters, how timing, sequencing, and dosing decisions shape outcomes, and what it takes to be an informed patient in today’s complex care environment. Through real-world stories and clinical insight, the conversation highlights the importance of collaboration between community and academic care teams, the growing role of the patient voice in decision-making, and the need to balance cutting-edge treatment with quality of life.

Whether newly diagnosed or navigating later lines of therapy, this episode offers practical guidance for making confident, informed decisions in multiple myeloma care.

Key Takeaways

• Multiple myeloma is increasingly treatable, with patients living longer than ever. Advances in therapy are leading to remission for many patients and significantly improving survival outcomes.
• Where you’re treated—and your care team—matters more than ever. The most effective care is team-based, involving academic specialists, community oncologists, and the patient along with their caregiver working together.
• Treatment decisions are more complex: timing, sequencing, and dosing all matter. With a growing number of options, patients and providers must navigate when and how to use therapies through ongoing, informed discussions.
• Being informed is essential to navigating care today. Patients have more access to information than ever before, and using that information effectively supports shared decision-making with their care team.