Five pillars of patient engagement in low-resource settings: success stories from thyroid advocacy in Kenya

In a region where thyroid disease remains largely misunderstood and overlooked, the Thyroid Disease Awareness Kenya (TDAK) Foundation has emerged as a transformative force, rewriting the narrative for thousands affected by thyroid conditions across Kenya.

To provide insight into successful patient advocacy in regions where it is relatively new and inspire replication in similar contexts, this article presents an outline of TDAK’s holistic, grassroots-to-global model, which is structured around five core pillars: awareness, education, empowerment, support systems, and community partnerships. 

1. Awareness

Thyroid disease, often underdiagnosed and misunderstood, continues to affect countless Kenyans, including children and teenagers, women over the age of 35, and people in their advanced age.  These sub-populations are highlighted because they are particularly vulnerable to thyroid disease, yet often overlooked. In children and teens, symptoms can mimic growth or behavioural issues, delaying diagnosis. Women over 35 face higher hormonal risks, making them the most affected group; in older adults, symptoms are often mistaken for normal ageing. Across all three groups, awareness remains low, leading to late detection and inadequate care.

Despite the increasing prevalence of thyroid disease, awareness levels remain critically low – a challenge compounded by myths, stigma, and limited access to specialised endocrinology care. Strong cultural beliefs are still held in many African settings, causing many to believe that thyroid disease is a rare or untreatable condition or confuse it with lifestyle or spiritual issues, leading to shame, silence, and delayed care. There are too few specialists because thyroid disease has long been under-prioritised in medical training and health policy. Those who are available are concentrated in urban areas and private hospitals, making access difficult and costly for the majority living in rural or low-income settings.

According to internal surveys and community feedback conducted by TDAK in 2022–2023:

• Over 60% of respondents had never heard of thyroid disease before symptoms emerged.

• Many were misdiagnosed for years, often being treated for conditions they didn’t actually have, such as malaria, depression, HIV, or troubling menopause symptoms. Symptoms like fatigue, weight changes, anxiety, or digestive issues were misattributed to common causes due to their mimic nature, overlapping signs, and limited thyroid screening. However, in some instances, thyroid disease coexisted with other conditions but remained undiagnosed because healthcare providers focused only on the more familiar illnesses. This led to prolonged suffering, inappropriate treatment, and missed opportunities for proper thyroid care.

“Before joining TDAK, I didn’t even know what the thyroid was,” says Faith, a 42-year-old mother of two from Kisumu. “I thought I was dying. The fatigue, the depression, the weight changes – I went from doctor to doctor. TDAK helped me get the right diagnosis, connected me to a specialist, and literally saved my life.”

"TDAK helped me get the right diagnosis, connected me to a specialist, and literally saved my life."

– Faith, 42

TDAK identified this lack of awareness not as a limitation, but as a launchpad for meaningful, life-saving impact. TDAK’s first breakthrough came by filling a massive gap in public knowledge through passionate storytelling of lived experiences, social media campaigns, TV and radio interviews, and medical camps (community-based outreach events in collaboration with stakeholders like hospitals that offer free thyroid screening, education, and referrals to help detect and manage thyroid disorders early). The foundation has shifted national conversations around thyroid disease from silence to visibility. The foundation continues to regularly partner with media houses and influencers to destigmatise thyroid disease and amplify patient voices.

"Before TDAK, no-one even knew what the thyroid gland is or what it can do to someone. Now, people around us ask the right questions – and that's powerful."

– TDAK community member

2. Education

TDAK delivers educational materials for patients, the public, and healthcare professionals. This education is culturally sensitive, which means it is language-inclusive, available in local dialects, and delivered both digitally and in person. Formats of TDAK’s education include:

• Easy-to-read articles transforming complex medical language into clear, understandable messages for patients and the public. 

  
  

• Thyroid health webinars hosted and organised for Kenyan endocrinologists, functional medical practitioners, and dieticians.

• Radio features leveraging international platforms available in Kenya using local languages like Swahili. For example, Radio France International (Kiswahili) is a radio station that has its branches in Africa delivering local and international news in Swahili. We have utilised the platform to create awareness, and the regional reach has been vast. We had patients share their experiences and a doctor providing medical expertise (links courtesy of RFI Kiswahili here and here).

  
  

• Community forums where patients share experiences to help demystify symptoms, diagnosis, and treatment options. These are  WhatsApp Community groups comprising patients from different  counties within the country and the region, as well as a private Facebook Group.

  
  

Our aim is to translate knowledge into power, equipping individuals to make informed decisions on their healthcare and aiding healthcare professionals in delivering optimal care.

3. Empowerment

"When I first joined TDAK, I felt helpless and was in denial about my condition. Although I'm not Kenyan, I'm a part of the TDAK family. I've learned so much from this community and now I write articles on thyroid awareness and health in general and am looking forward to publishing a book soon. I found my voice."

– Charity, TDAK Peer Mentor

Beyond informing, TDAK empowers – by actively supporting patients to become health champions and peer advocates in their communities. For example, through the TDAK Community Platform, survivors / long-term patients mentor newly diagnosed individuals, guiding them through their health journey. In addition, empowered patients now regularly speak at health forums, engage with policymakers, and serve as change agents.

A particular example of TDAK’s empowerment success comes from Susan, a teacher in Nairobi who spent seven years bouncing between clinics experiencing concerning levels of fatigue before being diagnosed with hypothyroidism. After diagnosis, she thought she was the only one who had this “mysterious” disease – but then her turning point came when she found TDAK on social media. This gave her hope that she was not alone. Through the Foundation’s empowerment and mentorship support, she learned to advocate for her own health and is now a peer mentor actively supporting new members who join the TDAK platform.

"TDAK taught me that I'm not a victim, I'm a champion; now I help others fight with knowledge."

– Susan, TDAK Peer Mentor

4. Support systems

Living with a chronic condition can be isolating, but TDAK ensures that no patient walks alone. Our peer-to-peer support networks are the emotional backbone of our organisation. These include:

• Regular virtual and in-person support group meetings, which offer safe spaces for patients to share experiences, struggles, and victories.

  
  

• Targeted support for youth, caregivers, and the diaspora.

  
  

In line with a focus on whole-person care, TDAK also provides direct referrals to therapists and mental health professionals.

5. Community partnerships

TDAK has cultivated strong partnerships with labs, hospitals, diagnostic centres, and policymakers to expand access to care. By working hand-in-hand with medical professionals and institutions, TDAK has become a trusted bridge between patients and the health system. These collaborations have enabled subsidised testing days, free screening camps, and thyroid health talks in both urban and rural settings. These partnerships extend TDAK’s reach and promote sustainable impact.

Conclusion

The Thyroid Disease Awareness Kenya Foundation is more than an organisation, it is a movement – driven by lived experience and sustained by the belief that every patient deserves to be heard, seen, and supported.

Together, our five pillars represent a comprehensive patient engagement model rooted in lived experience, trust, and resilience. Whether educating the public, advocating for policy change, or bridging gaps in access to care, TDAK’s work showcases how even in low-resource settings, community-led initiatives can slowly but surely lead to systemic change.

Join us. Partner with us. Learn from us. Together, we can transform lives – one empowered patient at a time.

TDAK Foundation is one of the first recipients of the ISPEP Patient Organisation Bursary; this provides patient advocates with the opportunity to receive free ISPEP membership in exchange for sharing their expertise through case studies, expert articles, and more. To learn more about the ISPEP PO Bursary, read our latest announcement or send us an email via the Hub.

This article is part of our series'The Advocate Assembly', which shares exclusive insights and perspectives from patient advocates effecting meaningful change. Watch this space for more coming soon!

Images courtesy of TDAK Foundation.