Cystic Fibrosis New Frontiers Committee (CFNFC) Update on Trikafta : July 2020

Cystic Fibrosis New Frontiers Committee (CFNFC) Update on Trikafta : July 2020

CFNFC is the SACFA subcommittee tasked with facilitating access to affordable CF drugs for patients in South Africa, with an initial focus on CFTR modulators such as Trikafta. Over the past few months of research and legal consultation, the committee has formulated a strategy and there are various initiatives in progress. The hurdles to be overcome should not be underestimated, with the setting of an affordable price being a major challenge. The current price to bring in a year’s supply of Trikafta is around R6million.

Although still in the early stages, the committee is pleased to announce that they have opened an introductory engagement process with Vertex Pharmaceuticals. The committee intends to build meaningful relationships with various stakeholders, including medical aids and the Health Department, and will endeavour to communicate any progress timeously to the CF community.

CFNFC will represent the South African CF community as a collective, and will head negotiations with Vertex to facilitate affordable access to Trikafta and other treatments for all CF patients. It is important that all interesting parties move forward as a united force to overcome a number of major challenges in this complex process.

Access to this exciting new drug would represent a significant and exciting development for SACFA, CFNFC and CF families alike.

For any CFNFC queries, parents and patients are welcome to connect with Belinda Nell (CFNFC Secretary) via email at

Exercise and CF

Exercise and CF

Regular exercise plays a very important role in maintaining a healthy lifestyle for both CF patients as well as healthy individuals. A regular exercise routine helps an individual to maintain a healthy body weight, reduce their risk of developing comorbidities such as diabetes, strengthens bones, strengthens your immune system, improves mood, as well as strengthens your respiratory and cardiac muscles.  However many CF patients are aware of the difficulties of integrating exercise into their routine.

Physical activity has been recognized to have considerable clinical benefits in CF patients. Some of these benefits have been mentioned above however here are a few that are more specific to  CF patients. Integrating exercise into your routine could slow an individual’s lung function decline, strengthen the heart muscle and thus allows it to cope better when the body is put under stress as well as improves lung function which increases the reserves to use during exacerbations or lung infections. Exercise also helps CF patients to be less limited in what activities they are able to do with friends and family and thus allows them to enjoy a more normal lifestyle. Regular exercise can also lead to an improved self-esteem and increased confidence and independence in CF patients.

Physical activity recommendations for each individual will vary according to age, weight, symptoms, lung function and current health. It is therefore important for CF patients to seek professional advice from a Biokineticist and physiotherapist who, along with the medical team, will advise the patient on their individual requirements, and work with the patient to deliver practical recommendations, ensuring they are doing what their body needs to stay healthy and strong. Physical activity should not be used to replace, but rather done in conjunction with regular physio sessions.

There are also however times where a CF patient will be advised not to exercise. Some of the contraindications for exercise are pulmonary hypertension, an exacerbation or respiratory infection as well as during courses of treatments or antibiotics. CF patients that also have diabetes should check their sugars before and after exercise and monitor them closely during exercise and always have a snack with them in case of a sugar low.

Some simple exercise guidelines for CF patients

It is vital for all children to develop a positive attitude towards exercise as well as good exercise habits from a young age. This starts early and with the family. When families commit to regular activity, children learn good habits and develop a good attitude towards it. Families should encourage exercise in the form of games or play time rather than traditional exercise such as running. Kids can be taught to ride a bike or to throw, catch and kick balls as this will provide the opportunity for them to potentially get into a ball sport later on in life. Gymnastics (stretching) and dancing are also a good form of exercise for kids as it is weightbearing activities like these in younger years that are so important for development of muscle tone and good bone density. Regular family walks in a beautiful setting can also be a good form of low intensity cardio exercise for kids and this is important for strengthening their respiratory and cardiac muscles from a young age.



For adults it is important that they include both cardiovascular and resistance training in their exercise routine. Low to moderate intensity cardio training includes activities such as cycling, jogging, walking and swimming and these are all vitally important in strengthening both your respiratory and cardiac muscles. Including this type of physical activity regularly could help decrease levels of exhaustion that occurs after performing normal activities of daily living such as house work , and thus improves overall quality of life.  Cardiovascular exercise also helps in weight maintenance as well as reduces the risk of acquiring other comorbidities.

Resistance exercise also plays an important role in strengthening both your bones and your muscles. Doing bodyweight exercise as well as light weights (dumbbells) or resistance band exercises are examples of resistance training.  This type of exercise is also important for maintenance of bone density as well as increasing muscle strength. This will also help reduce the stress that daily activities place on your body.

Stretching and breathing activities such as Pilates and yoga are also incredible ways for CF patients to strengthen their lungs and increase their lung capacity. Stretching will open up your chest and reduce the amount of pressure in your chest cavity and this too will improve your quality of life and ease of breathing.

The amount of time spent doing exercise is totally dependent on each individual and how they feel. It is important to start off slowly and build up and add on as you feel fit to.

For adults  that haven’t made regular physical activity  a part of their normal routine, they should seek medical approval before starting an exercise program. This will ensure that they can exercise safely. Some activities can make heart and lung disease and bone and joint problems worse and thus an exercise test may be needed to find safe levels for each individual.

To reduce the risk of musculoskeletal injuries be sure to participate in any activity in moderation until you have built up enough stamina and strength to exercise at a higher intensity.


Please feel free to get hold of me  on if you have any questions regarding exercise and CF. Otherwise follow our Instagram page @duo_balancedliving for balanced healthy living tips.

Written by Nikki Hamaan, a Biokinetecist from Duo Balanced Living



Guilt ridden CF mom

Guilt ridden CF mom

Click The day my twins were born, something else was born too. It is a different kind of love. It is deeper, and it feels different. It is as if my heart is running outside my chest. Nobody could ever prepare me for how much motherhood will change me. But with that, something else was born too unfortunately… the feeling of guilt…

It is essential to look at the sources of guilt. Guilt does not only influence me as parent, but it influences my children as well.  It happens that I feel guilty about something and let them get away with unacceptable behaviour.  And it is in that moment where the real harm is done. Guilt has just paved the way towards inconsistency, unpredictability and fear.

CF (cystic fibrosis) is a genetic life limiting disease with it’s own daily challenges.  Sometimes I get so tired that I silently wish I can go to hospital and rest. And then I feel guilty for it. Then the time comes where I have to go to hospital. Hospitalisations can be from 14 to 21 days. And then I feel guilty for not being at home and doing my part as a mother.

What do I do with my feelings of guilt?

I gave myself permission to be human. I miss my own children’s signals and give my own signals completely wrong at times.  One thing I have discovered is how precious it is to acknowledge each other’s emotions and to say it.  An example is the overwhelming emotion when I get home. Often it happens that the children just want to blow off some steam but we cannot leave them to hack each other, or me for that matter, into pieces.  We acknowledge how hard the time has been with me in hospital, the frustration, anger and the relief that I am back. Then the gentle reminder that CF is the enemy here, not me, nor their sibling. The rule of being kind and respectful towards all people is gently reinforced.

But then there are rules that will be broken! Like a Christmas bed in front of the TV, with popcorn and all the movies we can watch until we fall asleep. I make sure I lie in the middle and my body touches theirs, whether we hold hands, or cuddle cold feet together. Sometimes they will even ask me to hold them.  We talk, we play board games or cards. We just spend time together.

At times my body is in pain and I am really tired.  I have to find an acceptable way to communicate how I am feeling.  I started to use my body as a barometer to indicate how much energy I have. I could be full, half full or completely empty.  Being tired or having a bad day is not something to feel ashamed about.  With this open and honest communication, the person also has the right to say what they need to recharge their batteries.

My children are older and communication is something we really endeavoured to succeed in. How did I live with the feeling of guilt when they were babies?

I’m not perfect.  This simple truth my mother-in-law repeated more times than I can count. It helped to know that I am doing my utmost best and I can only give the whole Rida.  And luckily children are born to like their parents! (On a lighter note)

Seriously though… I did what I had to do to keep myself sane.  Motherhood is a major adjustment.  It can require you to change from a person who earned money to a wife who needs to ask her hubby money.  While you were working the interaction with like-minded people are taken for granted.  Often mothers are home alone with little to no contact with the outside world.  It gets lonely. You feel isolated. You don’t feel appreciated.

One thing that really caught me was the fact that I should feel grateful and happy every second of the day because CF sufferers don’t just have babies. But I didn’t feel that way always. And I felt guilty. And then I speak to another mother who confessed she would drive once or even twice around the block from her own house before she would enter some days – and she is a healthy mother.

I sang songs that made ME peaceful. I did not only sing baby songs. I read stories that were good for ME and made me laugh. I used my network of people as often as I could. I especially listened to the older ladies and their advice.

And I feel one of the biggest things I did right was to allow my hubby to be a parent without me hovering over him all the time. Without me telling him how to do things all the time. Without me criticising him every step of the way.

I reckon he will ask for help when he needs it. Also, he would do nothing that would harm our babies. The trust I communicated by my actions forged a whole new bond for us as well. He is an awesome parent! And our children know that their dad is my best friend. And maybe tonight I do not feel like the best mum ever, at least I can lie in his arms, ask for advice, have a good night’s rest and tomorrow I’ll be the best version of me again.

Laugh, love, live

Rida Viljoen

Rida Viljoen is a parent coach who believes parenting today leads to tomorrow’s bliss. She works with parents who want to take their parenting to the next level. With a little planning and a whole toolkit of techniques learnt early on, it can make all the difference when the teen years arrive.  The goal is to raise successful adults contributing towards the greater community in a meaningful way.

Click here to visit Rida’s Blog

Skuldgevoelens ry jou bloots – CF ma se perspektief

Skuldgevoelens ry jou bloots – CF ma se perspektief

Die dag toe my tweeling gebore was, was die dag wat ‘n nuwe vlak, vorm en diepte van liefde ook gebore was. Niemand het my voorberei hoe baie moederskap my sal verander nie. Daarmee saam het nog ‘n gevoel gekom… skuldgevoelens oor amper alles.

Dis noodsaaklik om na die bronne van die skuldgevoelens te kyk, want die skuld-emosie beïnvloed nie net my as ouer nie, maar ook my kinders. Hoeveel keer het dit al gebeur dat ek skuldig voel oor iets en dan kom hulle met onaanvaarbare gedrag weg? En net daar is waar skuld se invloed uitkring na onsekerheid, onvoorspelbaarheid en vrees in my verhouding met my kinders.

CF (sistiese fibrose) is ‘n genetiese siekte wat sy eie uitdagings bied. Soms raak ek so moeg dat ek stilweg wens ek kan hospitaal toe gaan om net ‘n bietjie te rus. EN voel ‘n ma nou skuldig as sy so voel…?  Dan op ‘n stadium is die hospitaal onafwendbaar en móét ek gaan. Hospitalisasies kan 14 tot 21 dae wees. EN voel ek dan juis skuldig omdat ek nie by my huis mense is nie…? Skuld dreineer jou, dis soos ‘n hamster op sy wieletjie. Al in die rondte, en jy kom nêrens nie.

Wat maak ek met die skuldgevoelens?

Ek het myself toestemming gegee om mens te wees. Ek mis my eie kinders se “signals” en ek stuur my eie “signals” verkeerd. Een ding wat ek wel al ontdek het, is om mekaar se emosies te erken, en hulle daarop te wys. Dis belangrik byvoorbeeld die oorweldigende gevoel wanneer ek tuis kom na ‘n lang hospitalisasie. Dit kan die tyd wees wat die kinders net stoom wil afblaas. Skielik is hulle lelik met mekaar en met my. Dit is nie aanvaarbaar nie. So hier is wat ek eerder doen wanneer die situasie homself voor doen. Erken die emosie van frustrasie, haat, en/of kwaad teenoor CF en nie teenoor ‘n persoon nie. Ek herinner hulle dat ons nie mekaar mag verniel omdat ons so voel nie. ‘n Lang vet drukkie, ‘n koppie tee wat mamma maak en dan is daar reëls wat aanvaarbaar is om te breek byvoorbeeld ‘n krismis bed te maak voor die TV, met popcorn en fliek tot ons oë toeval!

Gesels, wees bymekaar, spandeer tyd deur kaarte of ‘n bordspeletjie te speel. So kan ek ook nie dat my eie moegheid en ‘n lyf wat nie meer wil vorentoe party dae die oorsaak wees dat ek sommer misluk is met almal nie. Dit maak ‘n verskil om openlik daaroor te gesels. Ons gebruik ons lywe as barometers om te demonstreer hoeveel energie ons het. Is ek met ander woorde vol, half vol of dolleeg? Want om moeg te wees is nie ‘n skande nie. Daarmee saam het ons toestemming om vir die ander in die huisgesin te sê wat jy nodig het om jou batterye te “charge”.

My kinders is ouer en ons kan openlik nou kommunikeer. Hoe het ek met skuldgevoelens geleef toe hulle babas was?

Ek is nie perfek nie. Hierdie eenvoudige waarheid het my skoonma telkemale vir my herhaal. Dit het baie gehelp om te weet ek doen my uiterse beste en ek kan nie meer gee as die hele Rida nie. Gelukkig is kinders geprogrammeer om van hulle ouers te hou! (Dankie tog!) (Op ‘n ligter noot)

Ernstig nou, doen wat jy moet doen om kop te hou. Dis oorweldigend om te verander van ‘n persoon wat ‘n salaris verdien na iemand wat nou afhanklik moet wees van haar man vir geld. Terwyl jy gewerk het, het jy ander mense gesien en gesels. Nou skielik is daardie interaksie baie min of vir sommige geen. Skielik voel jy nie meer waardeer nie.

Wat vir my baie erg was, was die wete dat moederskap ‘n voorreg vir my moet wees, want CF-leiers raak nie sommer swanger nie. En ek het nie elke dag gevoel asof dit so ‘n voorreg is nie. ‘n Ma het eenkeer erken dat sy soms ‘n tweede of derde keer om die blok ry voordat sy in ry by haar huis, want sy sien net nie kans om dadelik huis toe te gaan nie. Ek het liedjies gehad wat MY rustig laat voel het. Ek het nie net baba liedjies gesing vir my kinders nie. Ek het stories gelees vir hulle wat goed was vir MY. Ek het my netwerk mense gebruik soveel as wat ek kon. Ek het veral na die ouer garde geluister met hulle raad oor hoe om babas groot te maak.

Een ding wat ek wel voel ek het honderd persent reg gedoen, is my man ‘n plek gegee om heeltemal pa te wees, sonder dat ek die heeltyd hom vertel het hoe om dit te doen of wat hy verkeerd doen. Ek het gereken hy sal vra vir hulp as hy dit nodig het. Ons vrouens moet versigtig wees dat ons nie die mans uitskop wanneer die babas kom nie. Jou baba gaan grootword en dan is dit jou man wat oorbly… Die vertroue wat ek vir hom gekommunikeer het deur hom toe te laat elke stap van kinders grootmaak, het ons twee gesmee as ‘n span wat die wêreld kan aanpak. My kinders weet hulle pappa is my beste vriend. En al voel ek nie vanaand soos ‘n “great” ma met groot sukses nie, kan ek in sy arms lê, raad vra, lekker slaap en môre weer die beste weergawe van myself wees.

Lag, wees lief en laat leef

Rida Viljoen

Rida Viljoen is a parent coach who believes parenting today leads to tomorrow’s bliss. She works with parents who want to take their parenting to the next level. With a little planning and a whole toolkit of techniques learnt early on, it can make all the difference when the teen years arrive.  The goal is to raise successful adults contributing towards the greater community in a meaningful way.

Click here to visit Rida’s Blog

Meet our newest contributors to the blog! Twins with a CF link!

Meet our newest contributors to the blog! Twins with a CF link!

Here’s a bit of a different story on our website! We are so happy to welcome Nikki and Jay as blog contributors! Read more to find out about their connection to CF! Jay’s post on nutrition is featured on this month’s nutrition post and Nikki’s post about CF and exercise will be coming up in July/August. Watch this space!

We are so excited to introduce ourselves. We are Nikki, and Jay- the duo behind Duo Balanced Living. We are twins, best friends and now business partners. We are both qualified healthcare professionals, with a mutual dream and passion for promoting evidence-based healthy living, while maintaining balance.

Dietitian: Jay

My name is Jay and I am a Registered Dietitian. I completed my Honours degree at UCT in 2018. I worked at Red Cross War Memorial Children’s Hospital during my Community Service year, where my passion for healthy eating and education (as well as love for children) grew. I am 2 minutes older than Nix and the blonder of the 2 of us.


Biokineticist: Nix

 My name is Nikki and I am a Registered Biokineticist. I completed my Honours degree at UCT in 2018. In 2019 I worked at The Sport Science Institute of South Africa (SSISA) and completed my internship. I discovered my love for neurological rehabilitation as well as developed a passion for regular, sustainable and fun exercise. I am also an avid animal lover and environment enthusiast.


What do we do?

Duo Balanced Living aims to provide a platform to educate, empower and journey with you through your healthy living endeavors. We aim to use the powerful combination of a healthy diet and appropriate exercise, based on available scientific evidence, to propel you to realize your health and fitness goals. Most of all, we endeavor to assist you to achieve and maintain a healthy, sustainable and balanced way of living.


We have designed several evidenced-based exercise and diet programs combinations that are suitable for a people in all phases of life with different health and fitness goals. Purchasing a program will give you a fitness program and healthy eating guide which can be followed in the comfort of your home, and requires minimal equipment. As one of our main focus areas is to walk alongside you in your health journey, you will receive a weekly check in message/email from both the Dietitian and Biokineticist. This will help us track your progress and afford you the opportunity to ask any questions or raise any concerns. We will work hard to build and develop a professional health practitioner-client relationship via digital platforms to best support and motivate you to achieve your goals.


Our link to Cystic Fibrosis

We have been blessed to learn about Cystic Fibrosis through our close friendship with Christy Long, and the Long family. We met Christy in 2009 when we found ourselves in Grade 8 together at St Mary’s DSG Kloof. Journeying with Christy for the last 11 years as she has navigated the challenges that come with CF, has given us a glimpse of what the reality of living with CF on a day to day basis looks like.  We are inspired by Christy’s bravery and courage over and over again, and are grateful for the opportunity that our friendship with her has afforded us to be exposed to CF in a personal, real and unfiltered way. We feel privileged to be able to continue to walk alongside Christy -our hero- supporting her in whatever capacity we can as her friends and cheerleaders. We know we still have so much to learn!  We hope that our series of blog posts will be helpful and encouraging to any CF patients and their families that they reach.


Twins Jay (left) and Nikki (right) with Christy Mulder, who has CF (in the middle)
Join us on our journey:

Follow us on Instagram:                     @duo_balancedliving.

Like our page on Facebook:                Duo Balanced Living

Email us:                                    



What is the Cystic Fibrosis New Frontiers Committee?

What is the Cystic Fibrosis New Frontiers Committee?

The life expectancy of patients with cystic fibrosis (“CF”) has increased substantially over the past 20 years – this has been primarily due to successes in coordinated delivery of care, and advances in CF treatment.

This treatment, however, only focuses on reducing symptoms and managing complications. Consequently, while supportive care has improved the prognosis for patients, the treatments have not addressed the underlying cause of CF – however, this has now changed.

Recently-introduced agents now directly target the CFTR protein. These drugs are called CFTR modulator drugs. Access to these drugs, however, is limited for most patients due to the high cost.

The Cystic Fibrosis New Frontiers Committee (“CFNFC”) was established on 20 February 2020 as a sub-committee of the South African Cystic Fibrosis Association (“SACFA”).  By uniting the efforts of all interested parties, including CF family members and medical specialists, the CF New Frontiers Committee seeks to develop and implement a strategy which will provide affordable access to these life-changing treatments for all CF patients.

COVID-19 Portal