Dr-Rosslyn-Ngugi-Consultant-physician-Endocrinologist-and-Chairperson-Kenya-Diabetes-Study-Group.Photo courtesy Victoria Musimbi
In the heart of East Africa, where the rhythm of daily life often overshadows the silent battles fought within, a hidden health crisis has long festered, disproportionately affecting women and leaving a trail of misdiagnosed suffering.
Thyroid disorders, often subtle in their onset yet devastating in their progression, have for years been a medical enigma in Kenya, with symptoms frequently dismissed as stress, fatigue, or even witchcraft.
But amidst this backdrop of neglect, a powerful movement is taking root, driven by the sheer will of a woman who stared death in the face and emerged not broken, but emboldened.
Sarah Katulle, a mother, a survivor, and now a relentless advocate, has transformed her deeply personal struggle with Graves’ disease into a nationwide crusade for health equity through the Thyroid Disease Awareness Kenya (TDAK) Foundation.
Her story is a poignant testament to the human spirit’s resilience and the transformative power of social investment.
A Mother’s Desperate Plea: The Unseen Scars of Thyroid Disease
For Sarah Katulle, the descent into the bewildering world of thyroid dysfunction began subtly, innocently, in the aftermath of a joyous occasion – the birth of her daughter 13 years ago.
What should have been a period of maternal bliss quickly morphed into a harrowing ordeal.
“I started experiencing a flood of mysterious symptoms,” Sarah recounts, her voice still carrying the echoes of that dark period.
“Weight loss, chronic fatigue, mood swings, brain fog, palpitations, and a relentless weakness that left me feeling like I was dying.”
This wasn’t the ordinary exhaustion of a new mother. This profound, bone-deep weariness clung to her even after hours of sleep. Yet, her pleas for help were met with dismissive advice.
“You’re a new mom,” doctors would tell her, offering platitudes like “Get more rest. Avoid starch.” Sarah diligently followed their counsel, but her condition only worsened.
The medical system, designed to heal, became an echo chamber of misunderstanding.
The turning point was terrifyingly stark. Carrying her infant daughter, Sarah had a near-death experience, falling precariously close to a moving matatu.
That harrowing moment, a brush with mortality, ignited a fierce determination within her. “I went back to the doctor, determined not to leave until I had answers,” she asserts.
That day, a simple swallow test and blood work finally unveiled the truth: Graves’ disease, an autoimmune disorder that sent her thyroid into overdrive.
Even with a diagnosis, the path remained unclear. She was referred to an ENT, not an endocrinologist – a crucial misdirection that highlighted the systemic lack of a roadmap for patients like her.
Eight Years in the Wilderness: The Cost of Misdiagnosis
Sarah’s journey underscores a critical flaw in healthcare systems globally, and particularly in developing nations: the diagnostic odyssey.
It took her eight agonizing years and countless consultations before she finally met the right endocrinologist.
In a mere two months, this specialist achieved what years of desperate searching had failed to accomplish.
“That turning point awakened something in me,” Sarah reflects. “I realized I wasn’t alone, and I couldn’t be silent.”
Her suffering, however, was not the only catalyst for her advocacy. In 2014, a devastating loss struck close to home.
One of her dearest childhood friends succumbed to a misdiagnosed thyroid condition.
Like Sarah, her friend had experienced unexplained symptoms after childbirth.
But unlike Sarah, she lived outside Nairobi, where access to specialized care is a luxury. Doctors treated her for malaria, prescribed painkillers, but never once considered a thyroid test.
By the time her condition was taken seriously, it was tragically too late. “Her death devastated me,” Sarah confesses, “But it also inspired me to act.”
This profound loss solidified Sarah’s resolve.
The anecdotal evidence of her struggles, coupled with the tragic fate of her friend, painted a stark picture of a silent epidemic claiming lives and eroding the quality of life for countless Kenyans.
The need for a unified voice, for accessible information, and a supportive community became undeniably urgent.
From Facebook Group to National Movement: The Birth of TDAK
In 2015, Sarah began her mission informally, using the ubiquitous reach of Facebook to share her story and solicit questions.
The response was overwhelming. Her inbox flooded with messages from individuals experiencing the very same perplexing symptoms she had endured.
It was clear: there was a glaring information gap and a profound lack of community support. “So, I built one,” she states simply, her voice now imbued with quiet triumph.
By 2017, her informal outreach blossomed into a fully formalized entity: the Thyroid Disease Awareness Kenya (TDAK) Foundation.
Their mission, deceptively simple in its articulation, is monumental in its scope: raise awareness, educate the public, support patients, and advocate for better healthcare policies.
Today, TDAK is a force to be reckoned with. Operating across 27 countries, the foundation boasts over 5,000 members in its WhatsApp support groups – a digital lifeline for those navigating the complexities of thyroid disease.
Beyond virtual connections, TDAK has forged crucial partnerships with hospitals, laboratories, and endocrinologists, chipping away at the formidable barriers to affordable diagnostics and care.
Their multifaceted approach includes:
- Online Campaigns: Utilizing social media, TDAK shares compelling patient stories, demystifies complex symptoms, and empowers individuals with vital knowledge, transforming abstract medical concepts into relatable human experiences.
- Medical Camps: Bringing critical services directly to underserved areas, TDAK organizes free and subsidized screening and consultation events, bridging the geographical divide that often determines access to healthcare.
- Strategic Partnerships: Collaborations with institutions like Cerba Lancet (spanning 42 branches), Royal Family Hospital, St. Scholastica Uzima, and leading endocrinologists such as Dr. Rosslyn Ngugi have significantly broadened the reach of accessible care.
- Telemedicine: Recognizing the severe shortage of specialists – fewer than 40 endocrinologists serve the entire nation of Kenya – TDAK leverages virtual consultations to extend their reach, ensuring more patients can access expert advice regardless of their location.
Dr. Rosslyn Ngugi: The Clinical Champion at the Forefront
At the heart of Kenya’s clinical battle against thyroid disorders stands Dr. Rosslyn Ngugi, a consultant physician and endocrinologist with over 25 years of experience in internal medicine and a decade dedicated to hormonal imbalances, particularly thyroid diseases.
Her insights provide a crucial medical perspective on the crisis.
“By the time a patient sees me, they’ve often already consulted three or four other doctors without answers,” Dr. Ngugi observes, highlighting the prolonged diagnostic journey many patients endure.
Her work is a blend of precise diagnosis, effective treatment, and unwavering advocacy for those afflicted by hormonal imbalances.
She explains that the insidious nature of thyroid disorders, with their wide-ranging and often subtle symptoms, frequently leads to misdiagnosis and significant treatment delays, especially among women.
The thyroid gland, a small, butterfly-shaped organ nestled in the neck, is a powerhouse of human metabolism.
It produces two vital hormones, T3 (triiodothyronine) and T4 (thyroxine), which orchestrate a symphony of bodily functions: metabolism, energy levels, heart rate, mood, sleep patterns, brain development, digestion, fertility, and even cholesterol regulation.
When this delicate balance is disrupted, the consequences can be systemic and profound.
Dr. Ngugi sheds light on common thyroid conditions:
- Goitre: A painless swelling in the neck, often the most visible manifestation.
- Thyroid Nodules: Usually benign, but some can produce excess hormones or, in rare cases, be cancerous.
- Hypothyroidism: An underactive thyroid, leading to symptoms like debilitating fatigue, unexplained weight gain, persistent depression, chronic constipation, hair loss, and an extreme sensitivity to cold.
- Hyperthyroidism: An overactive thyroid, characterized by rapid weight loss despite increased appetite, anxiety, frequent diarrhea, insomnia, and heart palpitations.
These disorders can stem from various causes, including genetics, autoimmune conditions like Hashimoto’s (a common cause of hypothyroidism) and Graves’ disease (a common cause of hyperthyroidism), environmental triggers such as low iodine or radiation exposure, and even chronic stress.
Women and individuals with a family history of thyroid disorders are particularly susceptible, underscoring the critical importance of early screening.
The Elephant in the Room: Barriers to Care in Kenya
Despite the growing awareness, formidable barriers continue to impede effective thyroid care in Kenya. Dr. Ngugi articulates these challenges with striking clarity:
- Pervasive Lack of Awareness: Both patients and healthcare providers frequently overlook the nuanced symptoms of thyroid dysfunction, leading to a silent epidemic of undiagnosed cases.
- Chronic Delayed Diagnosis: Symptoms like fatigue and mood swings are routinely dismissed as stress-related, prolonging suffering and allowing conditions to worsen untreated.
- Prohibitive Cost of Testing and Care: A basic TSH (Thyroid-Stimulating Hormone) test, the first line of defense, costs between KES 1,500 and 3,000. A full thyroid panel can escalate to KES 6,000–15,000, placing vital diagnostics beyond the reach of many Kenyans.
- Inconsistent Medication Supply: Especially in public hospitals, patients often face the additional burden of purchasing crucial medications out of pocket due to erratic supply.
- Limited Access to Holistic Support: There is a glaring scarcity of dietitians and mental health counselors trained in thyroid-related care, particularly in rural areas, where the need is often greatest.
Beyond Medication: The Holistic Path to Wellness
Dr. Ngugi emphasizes that managing thyroid health extends beyond pharmacological interventions. Nutrition plays a pivotal role.
For those with hypothyroidism, she advises limiting dairy, iron supplements, and certain cruciferous vegetables like broccoli, cabbage, and cauliflower, which can interfere with thyroid function.
Conversely, individuals with hyperthyroidism are urged to reduce iodine-rich foods such as seafood and avoid excessive salt intake.
Crucially, supporting gut health with probiotics like kombucha is also recommended, highlighting the intricate connection between the gut and the endocrine system.
Mental health, often an overlooked dimension of chronic illness, is equally critical.
Stress can significantly exacerbate thyroid dysfunction, making practices like meditation, yoga, and regular exercise essential components of a comprehensive treatment plan.
This holistic approach, integrating mind and body, is vital for long-term well-being.
A Beacon of Hope: The ThyroAfrica Initiative
Dr. Ngugi speaks with genuine commendation about the ThyroAfrica Initiative, a collaborative effort between pharmaceutical giant Merck, Cerba Lancet, and local medical groups. This initiative is a multi-pronged attack on the barriers to thyroid care, encompassing:
- Subsidized Screening: Offering a crucial 25% discount on TSH tests, making initial diagnostics more accessible.
- Wider Medication Access: Working to ensure a more consistent and affordable supply of essential thyroid medications.
- Teleconsultations via TLab: Expanding the reach of expert medical advice through virtual platforms.
- Comprehensive Education: Providing vital information to both patients and healthcare providers, fostering a more informed and proactive approach to thyroid health.
“This initiative is helping bridge awareness, diagnosis, and access – something we’ve long needed,” Dr. Ngugi stresses, acknowledging the tangible impact of such public-private partnerships.
A Resounding Call to Action for Social Investment
Despite the progress, Dr. Ngugi’s call to action remains urgent and resolute.
She implores the Kenyan government to include thyroid disorders under the nation’s non-communicable disease policies, a move that would unlock crucial resources and prioritize this often-ignored health crisis.
She advocates for increased government investment in public education campaigns, robust diagnostic infrastructure, and the subsidization of care.
“We’ve come a long way,” she concedes, “but there’s still much more to be done, especially for women and rural populations who are often the most affected.”
On this World Thyroid Day, Sarah Katulle, the driving force behind TDAK, delivers a powerful, personal message directly to every patient, caregiver, and advocate.
Her voice, infused with empathy and unwavering determination, is a beacon of hope in the fight against a silent adversary.
“You are not alone,” she affirms. “Your struggle is real, your voice matters, and your healing is valid. At TDAK, we walk this journey with you.
We see you. We hear you. And we will keep fighting for you.”
In a nation where healthcare access remains a privilege for many, the story of Sarah Katulle and TDAK is more than just a medical narrative.
It is a human interest story of profound social investment – a testament to how one individual’s courageous battle can ignite a collective movement, transforming personal pain into widespread impact, and ensuring that no one has to suffer in silence from a condition that, with awareness and access, can be understood and managed.
Their fight is not just for thyroid health; it is a fight for dignity, for equity, and for the right to a healthy life for all Kenyans.
