Another sub-category under Health has now been created and named Morbidity 101. The first I will feature is the latest and newest disease or morbidity I was told by an ENT Specialist to be having: Van der Hoeve Syndrome.
The condition is new to my knowledge and I bet not too many health professionals know of this condition. It is actually one of the eight major classifications of Osteogenesis Imperfecta (OI) and is characterized by the presence of three symptoms or manifestations: blue sclera, hearing loss and osteoporosis, with known fractures. I have all three features.
The very first disease I was diagnosed with was OI, which is a genetic disorder which affects the bones. I was born with it and it was passed on to me by my father, including my three other sisters. OI is commonly-called “brittle bone disease” and it is the reason for my gradual hearing loss and periodic fractures. The white of my eyes (sclera) are colored blue.
Van der Hoeve Syndrome is named after a Dutch Opthalmologist Jan van der Hoeve who characterized the condition as a late-effect of OI. It is a progressive disease and doesn’t improve as the patient ages.
At the moment, at age 60, I cannot hear at all without my bilateral hearing aids. And when I wear the gadgets, I can only hear sounds. When someone talks to me, I hear the sound of the voice and with my improving ability to lip-read, I sometimes understand what is being said to me. When at home, I don’t wear the hearing aids and I totally rely on lip-reading and I have no problem communicating with my husband Waleed. I easily get what he is talking about. But with my two companions at home, very seldom I understand what they are talking about so they end up writing for me to read. It’s faster that way, actually.
Whenever I go to see a doctor, I try to understand what is being said but most of the times my caregiver-cum-personal driver jots down notes for me to read. I have had fractures in the past and the last one was in August 2016 and is called comminuted fracture of the patella, left knee. It is a type of fracture which bone breaks into more than one fragments. I am due this October 2017 for a knee surgery to remove the wires and metals fixed in order for the knee cap to heal.