Phillip Langat lost five relatives to motor neuron disease. Reporter Mercy Chelang’at says telling his story requires preparation and sensitivity.
Program Date: Nov. 18, 2025
When journalist Mercy Chelang’at received a tip from a Nairobi hospital communications staffer about a family enduring a profound rare disease battle, she knew it could not be a run-of-the-mill health story. She learned that retired veterinarian Philip Langat had lost five relatives to motor neuron disease, a progressive group of disorders that damage the nerve cells in the brain and spinal cord that control voluntary muscle movement.
“It can be emotionally taxing because people are affected at a personal level and the people love their family members,” said Chelang’at, an investigative health and science reporter with Nation Media Group. “People love their siblings, people love their parents. So at the end of the day, your language as well needs to be compassionate. You need to be a person who understands, who reads the room during the interview.”
As the eldest sibling in a large extended family, Langat endured the fear, worry and financial strain that plague people living with rare disease and the loved ones who support them.
“The body gets so weak, but the mind carries the heaviest weight. The mind really suffers,” said Langat, who founded the Motor Neuron Disease Society of Kenya, after navigating the lack of access to information, reseach, clinical trials and funding that families grappling with a rare disease diagnosis must endure in Kenya and throughout the African continent.
On Nov. 18, Chelang’at and Langat briefed NPF Rare Disease Reporting fellows about the often overwhelming psychosocial impact of rare diseases, and how journalists can produce contextual stories about the mental health of people living with rare disease and their caregivers.
Motor neuron disease stalks silently yet mercilessly
Langat said the first case hit his family in 1987, when an uncle who was studying in Germany began exhibiting symptoms. Because there was no formal diagnosis at the time, word spread in the community that witchcraft may be the culprit.
By 2007, when his brother Jonathan’s health began to decline, Langat tried to use his veterinary medicine training to help, seeking treatments internationally and advocating for his care in the ICU. Through exhaustion and anxiety, motor neuron disease was finally identified, but Langat and his relatives were still adrift.
“It was the most painful thing on earth, but we agreed we were going to work very hard, and we learned, we read, read many books. So these conditions gradually impacted in our family as we witnessed their courage and pain and declining health.”
Caregiving takes a toll
Langat acknowledged the deep well of anxiety that loved ones of rare disease patients experience. Family structures can collapse under the weight, and when there’s limited or no mental health support available, the crisis compounds.
“I carry a lot of guilt. Also, my brother told me to look for a drug that was in a clinical trial, and there’s no lengths I didn’t go to, even including writing to the president of the Republic of Kenya. But we could not get it. So that guilt I still carry. And then the death, fear of death without dignity. My brother was in a general ICU, he saw people dying every day but him, he told us never to be put in that box. So it was very, very hard.”
That’s why Langat founded the Motor Neuron Disease Association of Kenya, to help others who may be paralyzed by isolation, fear and misinformation.
“I’ve come out from the family to talk about this, but I am telling you I have people who are wondering what I’m doing. But I know if we don’t come out like this, we’ll never get treatment, especially in the global south, in Africa and possibly in Kenya. It’s my duty to tell the world that we need to solve this problem, especially from the global south.”
How journalists should handle rare disease stories
“Do your homework medically,” Chelang’at said of preparing for interview.
“This means you research about the disease, how it presents and the common misconceptions … this prepares your mind for what is coming if you’re going to be talking to (the person living with rare disease). You do not want to be caught looking shocked and looking judgmental and behaving a certain type of way. So understand the disease that you’re going to be dealing with.”
Offer flexibility in scheduling interviews
Most importantly, be mindful of the complexities rare disease families face.
“Schedule an interview as soon as you are able to, because we have seen instances where the family is ready to do an interview and the reporter somewhat dilly dallies. And then unfortunately either the patient falls ill again and you cannot access them or, God forbid, they lose their life.”
Watch your word choice
Chelang’at advised journalists to carefully convey the experiences of people living with rare disease.
“What is Ezra struggling with? What is his daily routine? For example, when they wake up in the morning, how many tablets do they take if they’re taking medication, if it is a disease that limits movement, how do they go about that?’
And don’t use the word “patient” if you can avoid it.
“Try your best to say a person living with condition X. (This) is to avoid sensationalism using language like ‘victim’ or ‘suffering’ or saying this is a tragedy because these are terms that are condescending.”
Access the full transcript here.
This fellowship is funded by Fondation Ipsen. NPF is solely responsible for the content.