All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit

In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Priya Bowry Sikand from Nairobi, Kenya, leader of one of the newest ACARE centers in Africa. Together, they discuss the unique challenges of diagnosing and managing angioedema in East and Central Africa, as well as the opportunities to improve care through education and collaboration.

They discuss:
🔹 Which types of angioedema are most commonly seen in Kenya and the surrounding region?
🔹 How do chronic infections contribute to angioedema and urticaria presentations?
🔹 Why are food-related and aeroallergen-associated angioedema cases particularly relevant in this setting?
🔹 What are the current challenges in diagnosing hereditary angioedema (HAE) in Africa?
🔹 How limited is access to specialized testing and modern HAE therapies?
🔹 What role do education, awareness, and ACARE play in improving patient outcomes?

Dr. Bowry Sikand shares insights from her clinical experience and highlights the significant unmet needs in HAE care across sub-Saharan Africa. The conversation emphasizes the importance of physician education, improved diagnostic pathways, and equitable access to effective treatments for patients living with recurrent angioedema.

Key Learnings from the Episode:
Chronic infections are a common cause of angioedema and urticaria in East Africa.
Food-related angioedema is frequently encountered in clinical practice.
House dust mite allergy can contribute to recurrent facial angioedema.
HAE remains significantly underdiagnosed across sub-Saharan Africa.
Access to C1 inhibitor testing is limited and often expensive.
Modern HAE treatments are not widely available in many African countries.
Many patients rely on older therapies such as danazolandrogens and tranexamic acid.
Education and awareness are essential for improving HAE diagnosis.
International collaboration helps expand access to expertise and training.
Patients with HAE could achieve much better outcomes with improved access to diagnostics and treatment.

Chapters:
00:00 Introduction to the episode and guest
00:42 Guest introduction and regional context
02:30 Common angioedema cases in Kenya
03:28 Diverse patient population and regional differences
04:27 Infections and their role in angioedema
05:24 Food allergies, especially meat, in Kenya
06:24 Environmental factors and aeroallergens
07:11 Infectious disease testing and treatment strategies
08:33 Treatment options and access challenges
11:28 Hereditary angioedema (HAE) in Kenya
12:03 Diagnostic challenges and resource limitations
14:03 Treatment access and regional disparities
16:42 Training, education, and future prospects
18:05 Final thoughts and call for global support

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In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Isabelle Boccon-Gibod from the French ACARE center in Grenoble about the new European expert consensus on applying a treat-to-target (T2T) approach in hereditary angioedema (HAE). The discussion explores how goal-oriented care can improve consistency and patient outcomes in daily clinical practice.

They discuss:
🔹 What does a treat-to-target approach mean in HAE management?
🔹 How does T2T differ from traditional guideline-based treatment?
🔹 What are the short-term and long-term goals in HAE care?
🔹 Why are patient-reported outcome measures (PROMs) so important?
🔹 What challenges exist when implementing T2T in clinical practice?
🔹 How could this consensus influence future guidelines and research?

Dr. Boccon-Gibod explains how structured monitoring, shared decision-making, and clearly defined treatment goals can help move HAE care closer to the ultimate aim of “normalization of life.” The episode highlights the importance of individualized care and practical strategies for improving disease control and quality of life.

Key Learnings from the Episode:
Treat-to-target introduces a structured, goal-oriented approach to HAE care.
The approach combines short-term symptom control with long-term quality-of-life goals.
Normalization of life is the ultimate treatment target in HAE.
Patient-reported outcome measures are central to monitoring disease control.
The AECT is an important tool for assessing HAE control in practice.
Shared decision-making plays a key role in treatment planning.
Clinical practice and access to therapies still vary across countries.
Structured follow-up can improve consistency of care.
T2T may influence future HAE guidelines and clinical research.
The approach aims to improve long-term outcomes for patients with HAE.

Chapters:
00:00 Introduction to Angioedema and the Podcast
01:04 Understanding the Treat-to-Target Approach
02:15 The Role of Patient-Reported Outcome Measures
10:19 Challenges in Implementing the T2T Approach
12:16 Impact of Consensus on Future Research and Guidelines

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In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Patricia Karani, patient advocate from Kenya, about her personal journey with hereditary angioedema (HAE) and her work supporting patients across sub-Saharan Africa. Recorded in the context of the Global Angioedema Leadership Conference (GALC), this episode brings a powerful patient perspective to the discussion.

They discuss:
🔹 What is it like to live with undiagnosed HAE for decades?
🔹 Why is delayed diagnosis still a major challenge worldwide?
🔹 What barriers do patients face in accessing life-saving treatments?
🔹 How can patient advocacy help improve awareness and healthcare systems?
🔹 Why is collaboration with governments essential for access to therapies?
🔹 How can patients become advocates and drive change in their regions?

Patricia shares her story of nearly 30 years without proper diagnosis or treatment, and how this experience shaped her mission to support others. The episode highlights the importance of awareness, building patient networks, and advocating for better access to treatment—especially in regions where rare diseases are often overlooked.

Key Learnings from the Episode:
HAE diagnosis can be delayed for decades, leading to significant suffering.
Misdiagnosis as allergies is common and delays proper treatment.
Access to HAE therapies remains a major challenge in many regions.
Patient advocacy is essential to raise awareness and improve care.
Collaboration with governments is key to making treatments affordable.
Building patient networks helps identify and support affected individuals.
Education of healthcare professionals is critical for earlier diagnosis.
Living with controlled HAE enables patients to live a full life.
Personal experiences can be a powerful driver for advocacy.
Global collaboration strengthens patient support and healthcare improvements.

Chapters:
00:00 Introduction to Angioedema and the Podcast
01:51 Patient Advocacy and the Global Angioedema Leadership Conference
06:40 Patricia's Journey with Hereditary Angioedema
10:15 Challenges in Patient Advocacy and Awareness
17:03 Motivation Behind Patient Advocacy and Living Fully

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In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Dr. Lili Voloncs-Mindszenthy from Semmelweis University, Hungary, recipient of the Young Investigator Award at the Global Angioedema Leadership Conference (GALC) 2026. They discuss her groundbreaking research on improving the early diagnosis of hereditary angioedema (HAE) in newborns.

They discuss:
🔹 Why is diagnosing HAE in newborns particularly challenging?
🔹 Which complement biomarkers can reliably indicate HAE from birth?
🔹 Why are C1 inhibitor levels and function more informative than other complement factors?
🔹 What are the limitations of current diagnostic approaches, including genetic testing?
🔹 How can early diagnosis improve patient outcomes and family screening?
🔹 What are the next steps in validating these findings for clinical use?

Dr. Voloncs-Mindszenthy shares insights from her study using umbilical cord blood samples, identifying consistent patterns in C1 inhibitor levels and function that may allow for much earlier diagnosis of HAE. The episode highlights the potential to move diagnosis closer to birth and improve early intervention strategies.

Key Learnings from the Episode:
Diagnosing HAE in newborns is challenging due to an immature complement system.
Early diagnosis is crucial, especially in families with known HAE history.
C1 inhibitor antigenic levels and function show consistent patterns in HAE newborns.
These parameters may serve as reliable early biomarkers for HAE.
Other complement factors such as C3 and C4 show high variability and are less reliable.
Genetic testing is useful but not always readily available or practical.
Umbilical cord blood testing offers a practical early diagnostic opportunity.
Larger studies are needed to establish newborn-specific reference ranges.
Early detection can improve patient management and enable family screening.
The research highlights a promising step toward diagnosing HAE from birth.

Chapters:
00:00 Introduction to Angioedema and the Conference Highlights
05:15 Lily's Background and Research Journey
09:55 Insights from the Global Angioedema Leadership Conference
14:07 Research on Diagnosing HAE in Newborns
18:29 Future Directions and Conclusion

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In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Prof. Maohamed Abuzakouk, Chair of Allergy and Clinical Immunology at Cleveland Clinic Abu Dhabi, about the evolving landscape of hereditary angioedema (HAE) care in the United Arab Emirates and the wider Middle East region. With more than three decades of experience in allergy and immunology across Ireland, the UK, and the Gulf region, Prof. Abuzakouk shares valuable insights into how awareness, diagnosis, and treatment of HAE have developed in recent years.

They discuss:
🔹 How does hereditary angioedema typically present in patients in the UAE and are there regional differences compared to Europe or North America?
🔹 What challenges contribute to delayed diagnosis, including misdiagnosis as allergic angioedema or surgical abdominal emergencies?
🔹 How do cultural and genetic factors, such as higher rates of consanguinity, influence HAE detection and family clustering?
🔹 What initiatives have improved physician awareness and education across the region in the past decade?
🔹 How do regional consensus statements help adapt international HAE guidelines to local healthcare systems?
🔹 Which modern therapies for on-demand treatment and long-term prophylaxis are currently available in the UAE?
🔹 Why are national and regional HAE registries essential for improving diagnosis and patient care in the Middle East?

Prof. Abuzakouk highlights the remarkable progress made in the UAE, including improved access to diagnostic testing, modern therapies, and international collaborations with networks such as GA²LEN and ACARE. At the same time, he emphasizes the importance of continuing efforts to identify undiagnosed patients, establish regional registries, strengthen patient advocacy groups, and expand education for healthcare providers. The discussion concludes with a clear vision for the future: eliminating diagnostic delays, improving quality of life for all patients with HAE, and ultimately achieving zero preventable mortality from the disease.

Key Learnings from the Episode:
Hereditary angioedema in the UAE presents clinically similar to cases in Europe and North America.
Higher rates of consanguinity may contribute to larger affected families and genetic clustering.
Delayed diagnosis remains a challenge, particularly in older generations of patients.
Abdominal HAE attacks are frequently misdiagnosed as surgical emergencies.
Educational initiatives and small-group training programs have significantly improved awareness among clinicians.
Improved laboratory access to C4 and C1 inhibitor testing has facilitated earlier diagnosis.
Regional consensus guidelines emphasize early diagnosis and universal access to on-demand therapy.
Specialized allergy and immunology centers remain limited across the region.

Chapters:
00:00 Introduction to HAE in the UAE
06:58 Challenges and Regional Differences in HAE
09:52 Awareness and Education Efforts
11:12 Regional Consensus on HAE Management
14:05 Future Steps for HAE Care in the UAE

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