Cushing’s Syndrome Advocate Urges Government Support For Rare Diseases

Cushing’s syndrome survivor and public health advocate, Ms. Aisha Adamu Fari, has urged the Federal Government to prioritize research, awareness, and early diagnosis of rare diseases in Nigeria.

Speaking at a Cushing’s syndrome awareness event in Abuja, Fari recounted her emotional journey through misdiagnosis, life-threatening symptoms, and the psychological toll of navigating a little-known condition.

“Rare diseases are often ignored in our public health system. Patients are left confused and unsupported due to misdiagnosis and lack of awareness—even among doctors. That has to change,” she said.

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure to high levels of cortisol. It can result from medication, tumors, or, in Fari’s case, chronic emotional stress. She was diagnosed with pseudo-Cushing’s syndrome, triggered by the trauma of losing her father.

She recalled a near-death experience after eating noodles, unaware that refined foods could worsen her symptoms.

“I had high blood pressure for two weeks straight. I would sleep and wake up tired. My daily routine collapsed—it felt like my body had shut down.”

Beyond physical symptoms, Fari highlighted the condition’s impact on mental health and daily functioning.

“Even loud sounds trigger palpitations. Living with this in an environment as challenging as Africa is doubly hard,” she said.

Fari called on President Bola Ahmed Tinubu’s administration to invest in rare disease research, strengthen advocacy, and train healthcare providers to improve early detection.

“People are dying in silence. We need government support in research, advocacy, and treatment,” she said.

Her mother, Safiya Abubakar Koko, also spoke at the event, sharing the family’s struggles.

“It was a very difficult period. We had to rely on online research because most doctors didn’t understand what was happening. It wasn’t until we saw an endocrinologist that things started to make sense.”

She stressed the importance of strict diets rich in protein, magnesium, and calcium to manage the condition, calling for broader public awareness to spare other families the same hardship.

Together, mother and daughter are championing the cause through awareness campaigns and support networks for those living with rare diseases.

“We just need to care more,” Fari said. “Because it could be anyone.”