Neurofibromatosis South Africa

Neurofibromatosis South Africa Raising awareness and offering support to NF families and patients in South Africa My main aim though, is to bring people with NF in South Africa, together.

I dedicate this page to my mother who had NF (but died of ovarian cancer in 2006), my brother who had NF, and died in 1989 of NF related cancer, and my father who lost a young son to cancer. Although there are many pages on Facebook related to Neurofibromatosis, I find that all of them are "based" abroad. This page is for EVERYONE with Neurofibromatosis or people related to someone with this disorder; or even for those who just want to find out more about NF. People who can exchange stories and experiences. People who are not aware that their neighbor 'down the road' is going through the same stuff as themselves. I have a very personal 'relationship' with NF. I inherited NF from my mother and so did my brother, who died at the age of 18 of NF related cancer (I was only 15 and my sister, 16). My sister is lucky enough not to have inherited this gene, and so is my beautiful son. I say thanks for that, every day. I remember that I was curious from a very young age, about the hundreds little bumps that mom had all over her body; always asking her if I would get those too. I remember her sad smile, telling me that she didn't know. Many years on, and I don't have those little bumps everywhere, no. Not very visible ones anyway. Mine grows inside, where you can't see them. Last year I was diagnosed with a MPNST (malignant peripheral nerve sheath tumor). The diagnosis came after routine surgery to remove a rather large and rather painful bump on my left hand. I had six weeks of radiation treatment for that tumor, but because they didn't know if there were any clear margins after the tumor removal, the oncologist couldn't do much more. A PET scan came out clear though, so we were all relieved. A few months ago, I started having pains in that arm and hand again; and we are now back to scans and stuff to find out more, and to see what to do. This is my story, or part of it and I will share with you as we go along; BUT PLEASE feel free to add your story on our wall too. I would like for the NF community in South Africa to unite and exchange stories, experiences and support.

First Fibroma removed on his head. Thank you to Dr Mark Steinmann and Liza for such a pleasant surgery and taking care o...
25/10/2022

First Fibroma removed on his head. Thank you to Dr Mark Steinmann and Liza for such a pleasant surgery and taking care of our son.



21/01/2022

Calling on all our NF warriors from the ages of 5yrs to 18yrs, please submit your story and some history as well as a photo or two regards your NF journey. We have been approached by Rare Diseases to submit some special candidates for the Reach For A Dream selection celebrating Rarex 2022. Please mail all submissions to helen@htgr.co.za on or before 01 February 2022.
(Neurofibromatosis)

Thank you to Dylan and friends for supporting NF at the Oxpecker this weekend
17/05/2021

Thank you to Dylan and friends for supporting NF at the Oxpecker this weekend

Our billboards thank you to Neil and Brian for your generosity
17/05/2021

Our billboards thank you to Neil and Brian for your generosity

Joy and Tristan representing us in Cape Town.
17/05/2021

Joy and Tristan representing us in Cape Town.

Our setup at Sandton Clinic today! Raising awareness for NF.
17/05/2021

Our setup at Sandton Clinic today! Raising awareness for NF.

Wishing all our incredible warriors HAPPY WORLD NF DAY!
17/05/2021

Wishing all our incredible warriors HAPPY WORLD NF DAY!

11/05/2021

Getting ready for world NF Day on the 17th, feel free to share everyone.

A hospital goodie bag going to Baragwanath today for one of our warriors ahead of their surgery
18/02/2021

A hospital goodie bag going to Baragwanath today for one of our warriors ahead of their surgery

In support if our warriors of the NF network abroad, doung our thing in SA for support. If you are unable to join us ple...
25/08/2020

In support if our warriors of the NF network abroad, doung our thing in SA for support. If you are unable to join us please share your videos.

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Four Ways

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Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

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+27823754889

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