A 14-year-old boy in Ghana is grappling with a life-threatening condition as doctors uncover an unprecedented case of Wilson’s disease, a rare genetic disorder causing excess copper retention.
The teenager‘s health crisis has marked the first known instance of this condition in the country, shedding light on both the family’s financial struggles and the unpreparedness of the healthcare system to handle such rare diseases.
The adolescent’s diagnosis has led to extensive damage to vital organs, including the brain, eyes, and kidneys.
The severity of the situation has prompted a closer look at the healthcare challenges faced by the family.
According to a flier on GHone’s facebook page announcing a special feature on the story, Journalist Nadima Umar Uthman delved into the financial hardships the family is enduring while navigating the complexities of Ghana’s healthcare.
Uthman’s report is aimed at bringing attention to the unique challenges posed by rare medical conditions, emphasizing the need for increased awareness, support, and preparedness within the healthcare system.
The plight of this young patient serves as a touching reminder of the importance of addressing gaps in healthcare infrastructure to ensure timely and effective responses to rare diseases.
Mark Worwonyo, featured in the video, is recognized as being at the primary school level.
He experiences stigmatization due to a rare condition that hinders his ability to carry out regular school activities, including completing homework and interacting with friends.
Regrettably, he has been unjustly branded as the ‘special child.’
Mark’s parents, with his father working as a mason struggling to secure consistent jobs and his mother’s undisclosed occupation, have expressed frustration.
Their attempts to seek help from professionals have been disheartening, as some individuals took advantage of their financial constraints and failed to provide the promised assistance.
According to Mayo Clinic Wilson disease is a hereditary illness that results in the organs accumulating excessive amounts of copper.
Wilson’s disease causes copper to accumulate possibly to a potentially fatal degree instead of being appropriately removed.
Usually, between the ages of 12 and 23, symptoms start to appear.
But younger and older people can be affected too.
Copper plays a key role in building healthy nerves, bones, collagen and the skin pigment melanin.
You usually take in copper from the food you eat.