For patients living with rare conditions, the hardest part can be feeling that nobody else understands. At this past weekend’s Namibia Health Exhibition, one advocate had a message for the people who care for them: you are not alone.
The Pharmacists Care Association of Namibia hosted the fourth edition of the exhibition at the Windhoek Country Club. Healthcare professionals from across disciplines came to share personal and professional insights.
Health ministry executive director Penda Ithindi said every person in the room has something to contribute.
“Each one of us holds individual letter tiles. When we put these tiles together, our contributions write many words, and those words bring solutions to healthcare,” he said.
Among the exhibitors was Cindy Botha, founder of GBS-CIDP Foundation Namibia, who represented the foundation under the Namibian Alliance for Rare Diseases. She told students and professionals that they do not have to support patients with rare conditions alone.
“The alliance and the foundation are there to help your patients navigate this journey. We connect them with other people who have the same condition,” she shared.
Botha said that connection starts with something simple. Patients often have symptoms that feel uncomfortable, or too trivial to raise with a doctor.
“You can confide in a friend. Once you do, you realise your symptoms aren’t unusual, and then you find the courage to face the challenges a rare condition places on you,” he said.
She urged professionals, nurses in particular, to read up on rare conditions. A deeper understanding, she said, builds empathy for what patients are going through as whole people.
“Every medical professional has a duty to promote connections in healthcare, and to support patients through education, advocacy and continuous research,” she added.
The alliance and the foundation aim to guide patients and those who care for them through peer support networks.
-mkambukwe@nepc.com.na
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