Health: Erdheim-Chester is a rare but deadly disease

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:


Recommended

by NEWSROOM AI
Read More
TV presenter chats about his faith, and the role it played in creating an NGO

TV presenter chats about his faith, and the role it played in creating an NGO

Co-founder of Simunye, Danilo Acquisto, chats about how his Christian faith played a role in the conception of his initiative.

[LISTEN] Combating seasonal allergies and hay fever

[LISTEN] Combating seasonal allergies and hay fever

#WeekendBreakfast host Africa Melane chats to Professor Jonny Peter about the benefits of Rooibos tea in alleviating allergies.

Local movie, 'Die Ellen Pakkies Storie', gets noticed for all the right reasons

Local movie, 'Die Ellen Pakkies Storie', gets noticed for all the right reasons

In the movie review, producer of 'Die Ellen Pakkies Storie', Paulo Areal chats about the support they've received from making the movie.

'I'm very excited to reintroduce myself to the people' - Asanda Mqiki, musician

'I'm very excited to reintroduce myself to the people' - Asanda Mqiki, musician

Jazz vocalist Asanda Mqiki chats to #WeekendBreakfast host Africa Melane about the challenges she faced in her 1st debut album.

Study shows growing incidence of heart diseases in stay-at-home dads

Study shows growing incidence of heart diseases in stay-at-home dads

Spokesperson for Pharma says that stay-at-home dads face stigma due to social norms surrounding their role as caregiver.

[LISTEN] Author tells CPT listeners how to manage their money like a grownup

[LISTEN] Author tells CPT listeners how to manage their money like a grownup

Author of 'Manage Your Money Like a F*cking Grownup’, Sam Beckbessinger, chats about why she wrote the book.

Popular articles
Hits from the bong (it’s legal!)… then off to work I go?

Hits from the bong (it’s legal!)… then off to work I go?

The consequences of consuming dagga at home and showing up at the office high. Bruce Whitfield interviews a labour lawyer.

Tax ombud to probe Sars – yet again - after taxpayers complain

Tax ombud to probe Sars – yet again - after taxpayers complain

The Money Show’s Bruce Whitfield interviews Adv. Eric Mkhawane, CEO at the Office of the Tax Ombud.

Medical aid premiums are set to increase in 2019

Medical aid premiums are set to increase in 2019

The submissions are currently with the Council for Medical Schemes for consideration.

Assisted suicide activist facing murder charge released on bail

Assisted suicide activist facing murder charge released on bail

Eyewitness News reporter Shamiela Fisher gives a summary of the court proceedings for Sean Davison.

'We can barely enforce tobacco legislation, how will we to deal with dagga?'

'We can barely enforce tobacco legislation, how will we to deal with dagga?'

International law enforcement expert and former Drug Unit Commander Lobo das Neves says ruling opens a different can of worms.

Basic Education to introduce Kiswahili and coding to SA's curriculum

Basic Education to introduce Kiswahili and coding to SA's curriculum

Basic Education spokesperson Elijah Mhlanga spoke to Joanne Joseph on the Afternoon Drive to elaborate.

ConCourt rules dagga legal for private use, but what is private?

ConCourt rules dagga legal for private use, but what is private?

Associate Professor of Law at Wits University James Grant says the ConCourt did not define what private use was.