Our SACFA Social Media Group is growing and through our surveys and interactions with others, we realised that some people aren’t aware of the support that is out there for the CF Community.
The Association is made up of 3 main bodies; Gauteng, CT and KZN regions. We are working together to discover what support is already in place as well as what support is still needed.
When the CF Association started, times were different. There was a lot of focus on children with CF and their parents. And as the treatment, and thus life expectancy, has improved; there have been so many new groups arising that need specific support. Support that not just any CF person or parent is able to give.
There was once a time when all communication for the Association was done via telephone calls and snail mail! Social media has opened up an amazing opportunity for us to connect with others who may be in the same boat as us. And on top of that, social media also allows us to connect without the added risk of cross infection.
Having CF, or a family member with CF, can be a journey filled with uncertainty, anxiety and sometimes loneliness. Having a way to connect with others, who may be going through similar experiences and emotions, can provide a lot of comfort and support during tough times; and friendship and connection during the good times.
These seem to be the main groups that we have discovered, but there may be other groups we have missed out. If you would like to add to this list, please let us know at email@example.com.
Here is the support that is already available. Some of these groups were started by the Association and some were started by CF members or their parents.
New CF Parents (newly diagnosed children of any age)
-If you have questions or need support, feel free to contact:
Nicky De Charmoy – 081 043 5235
Debbie Long – 083 643 3328
-SACFA have created a “Finding Out” Booklet for new parents and patients.
Download it here
-Parents of newly diagnosed CF patients receive a ‘Welcome pack’.
-If you or anyone in your family may require counselling, feel free to contact
Anne Dunn (Registered Counsellor, specialising in Trauma counselling) – 082 462 3783
Anne has offered to counsel free of charge, but should you be able to- a donation to SACFA would be greatly appreciated.
CF Parents with young children and teenagers
-Booklets will be available shortly for parents, teachers and caregivers.
These are from CFSmart Cystic Fibrosis education program (from Australia) and include:
A Guide to Cystic Fibrosis for Early Childhood Educators
Starting school with Cystic Fibrosis
A Guide to Cystic Fibrosis for High School Teachers
Once these are ready we will let you know. Contact Nicky De Charmoy – 081 043 5235 for more info.
Parents and adult CFs alike
-There is also a WhatsApp group that was started by Rare Diseases. It is a national group of Cystics, parents and medical professionals called ‘CF Support South Africa’. If you would like to be added, please contact Rida Viljoen 082 858 0793
-Our Facebook Group is available for parents to ask questions and connect with others: https://www.facebook.com/groups/sacfa/
-If you would like to find out more about support options for this group, feel free to contact:
Alan Dunn – 083 285 5853 or Nicky De Charmoy – 081 043 5235
Teens with CF
There are no existing WhatsApp or Facebook Group specifically for Teens. If you know of someone who may be interested in providing support to teens, please let us know at firstname.lastname@example.org
There are many support options on social media for adult CFs. If you know of any that we haven’t added, please let us know.
-Our Facebook Group is available for adults CFs to connect and ask questions https://www.facebook.com/groups/sacfa/
-WhatsApp group started by Rare Diseases. This is a national group of Cystics, parents and medical professionals called ‘CF Support South Africa’. If you would like to be added, please contact Rida Viljoen – 082 858 0793
-WhatsApp group for Adults (496 & Milpark). This is a group for Adults Cystics attending the Milpark and Charlotte Maxeke Clinics. If you’d like to join, please contact Kimberly Keyzer – 074 476 6185
Women with CF
–This group is for adult female CF patients.
Christy Mulder has agreed to provide support for female CF patients. If you’d like to get hold of her, WhatsApp Christy on 083 379 8551
Men with CF
-As of yet there are no groups specifically for Men with CF. If you’d like to get involved in providing support, or know of any existing groups, please let us know on email@example.com
Newly Married CFs and New Moms with CF
-If you’d like to connect with other CF patients with children, or if you are thinking of having children and would like support, there is a Facebook Group called ‘SA Moms with CF’ https://www.facebook.com/groups/538339650181700/
Clare Emms (CF) has been married for 7 years and has two children. She has offered to provide support to those who are getting married and those thinking of having children. You can WhatsApp Clare on 083 285 7697
-There is also an International Facebook group called CF Mummies: https://www.facebook.com/groups/cfmummies/
Pre-transplant patients and Post-transplant patients
-Alice Vogt and Fawn Rogers (The Founders of TELL) have started a WhatsApp support group for anyone who is considering a transplant or for anyone who has already had a transplant.
Contact Alice if you’d like to be added to the group: 084 580 1452
–Facebook group: http://www.facebook.com/groups/livinglegaciessupportgroup/
-Alice’s blog: https://livinglifebreathlessly.blogspot.com
We have some older and wiser CF members who have been through it all and have stories to tell and advice to give.
If you are a ‘Wise Cystic’ wanting to connect with others, contact Stefan Aichner on firstname.lastname@example.org. He has CF and is an anesthetist who spends some of his time out of the country, (so may take a while to reply to emails).
Family who have lost a child with CF
–As the Association we would really like to provide support for families who have lost loved ones due to CF. No one has started a support group yet, that we know of, but if anyone would like to get involved and provide support please contact us.
-We do, however , have a counselling option available, feel free to contact Anne Dunn (Registered Counsellor) – 082 462 3783
Anne has an HonsBPsych (Registered Counsellor) and completed her training at the Steve Biko Hospital working in the casualty and trauma units.
-Alternatively, if you are needing support in any other way and don’t know where to look, feel free to contact
Alan Dunn – 083 285 5853 or Nicky De Charmoy – 081 043 5235
Each of these groups come with their own unique challenges and questions and there isn’t one person on our Committee who can offer support to each group.
The Association works on a volunteer basis and we only have so many members who can offer and provide support where needed. If you fit into one of these groups, and live anywhere in South Africa, and would like to provide support then please contact us on email@example.com and let us know. This could entail manning a WhatsApp group or Facebook group (whatever you feel most applicable for your group) and being prepared to offer a listening ear or a helping hand where necessary.