Erdheim-Chester Disease is a rare disease that involves the excessive production of histiocytes, which are a type of white blood cell. This leads to the formation of tumours. The cause is as yet unknown.
There are about 600 known cases worldwide and recovery or survival rate is shockingly low.
CapeTalk's African Melane chats to Anthony Edwards who lost his father to the disease almost a year ago.
He fought the disease hard for about three years where it really affected his life on a day-to-day basis.— Anthony Edwards, father died of Erdheim-Chester disease
Erdheim-Chester Disease has recently been classified as a blood cancer.
It involves two aspects, one where it affects the body, and the other your central nervous system.
It affects the control of your motion functions, so you lose control of your arms and your legs...then the other side is pain, bone pain, abdominal pain...— Anthony Edwards, father died of Erdheim-Chester disease
He says doctors have not yet been able to pinpoint a cause with cases as young as 4 and as old as Anthony's dad.
The struggle is finding out how you get and what you get it from. It is definitely not hereditary. They have managed to find that out.— Anthony Edwards, father died of Erdheim-Chester disease
He says the three years his father suffered was the hardest time for the family but his father was exceptionally strong.
For a man who was so strong, he needed daily help every day.— Anthony Edwards, father died of Erdheim-Chester disease
But it brought their family very close together.
Anthony and friends decided to cycle from Johannesburg to Cape Town to raise awareness about the disease. It is their third cycle and he says he has seen increased interest.
Take a listen to Anthony's story: