The Joburg Adult CF Clinic at CMJAH has provided a high standard of treatment for around 40-60 adult state patients over a period of 17 years. The doctors have been funded by the SA Cystic Fibrosis Association Central Region over this time, with a funding requirement now in excess of R300k per annum. Funds have been raised mainly through large events requiring public participation.
“We now have insufficient funds to pay the doctors’ salaries.”
The pandemic has shut down all our main fundraisers for the foreseeable future, so although SACFA Central Region is still operational, we now have insufficient funds to pay the doctors’ salaries.
As already communicated to patients by Sister Furlonger and the doctors, adult patients will in future have to join the adult respiratory clinic in area 356 (on a Monday or a Wednesday) and join the queues at the pharmacy for their medication. The decision to close the Adult CF Clinic as of 26 November was only taken after all other avenues had been explored, including discussions with hospital management. This unfortunate closure, although inevitable, is sad not only for CF patients but also for the medical staff and SACFA Central Region, who started this clinic in 2004.
Thanks to those who kept this clinic running
Dr Baird, Dr Gouws and Sister Furlonger have done a fantastic job running the Adult CF clinic over so many years, and SACFA is most grateful to them for providing this service with meagre financial reward. It was about true dedication, not monetary gain.
We will not be able to get this clinic going again unless there is a guaranteed annual income of over R300K for at least 5 years. Fundraising up to now has been left to a handful of Central Region committee members (past and present) who work purely on a voluntary basis.
(Continued from part 1)
Work and social life
As we all know CF is a very challenging condition it needs someone who is financially stable. It affects you mentally and emotionally and it needs you to be strong and accept it and learn to live with it. I struggled a lot- I needed to work so I could take care of my financial needs e.g for my treatment, food, clothing, shelter etc. But all that was difficult since I was not working and it was not easy to get a job because I would have to explain to the employer about my situation; asking for leave every month so I could go and get treatment. It became pointless to look for a job so I came to a conclusion that I should move around a sell anything I could lay my hands on. This became a challenge also as I would move around walking kms selling tupperware, perfumes.
I would walk whilst I felt shortness of breath sometimes and coughing. I would sit down to catch my breath and walk again. It was really hard sometimes. I would walk in when it was sunny as we know our sweat turns to salt you would see people looking at me wondering what is happening. I could not socialise as I was scared of discrimination from people since I heard “big tummy”, “small body”, “coughing” and people would say its TB or KWASHIORKOR. I had to hide all the time. There comes a time where I wanted to have a female friend- I was shy what I would tell her and mostly about me not being able to have kids. It was quite a mountain to climb for me. It was quite a struggle for me to get medication, to see the doctor, eat and everything as we need to eat certain foods.
Finding treatment in Zimbabwe
It was difficult to find treatment in Zimbabwe as I was told by that time I was the only one with CF. The government at some point imported something for me from South Africa but at some point it stopped. I had no choice but to live without any treatment for 5 years because we didn’t know what to do during those 5 years. I tried to hold on but it came to point whereby I couldn’t hold on I could feel my life was slowly drifting away from me. Until I told my Mum I can’t hold on anymore she then took it upon herself to stand up and come to South Africa to ask for help.
That is when she then found out about Charlotte Maxeke. I then came to SA and started treatment under Dr Cathy Baird and Dr Lindy Gouws. The struggle was not yet over as I was supposed to think about my travelling finances as I was not working. I had to come up with something so I could get my treatment. I was told I should come every month for treatment and every 3 months for my iv admissions. All that needed me to think about money for transport, food, accommodation when I’m this side. I would sometime crash with my brother for days as he has his family rent a small apartment. This meant I would sleep in the kitchen on the floor using old cushions. As we all know the living conditions in the city of Joburg, but I had no choice.
Travelling from Zimbabwe to South Africa is so tiring in a bus every month almost thousand kms. I was meant to cross with a boxes of treatment going back to Zimbabwe sometimes I would be questioned at the border about the treatment. As we all know with CF you required to take your treatment time and again e.g insulin with every meal but it was hard to do that on a bus you would be forced to wait till you reach where the bus will stop. Then you rush to the toilet to use my insulin.
Sometimes you need oxygen you can’t even nebulise by then all you be feeling tight on your chest. But there was nothing I could do. I was supposed to pull through the whole journey you can’t even cough when you sitting next to someone so will be forced to suppress the cough and imagine how difficult it is to do that the whole journey. I went through a lot of struggles which never end. Then I sat down and ask myself how did I pull through all this then my answer is maybe God kept me for a reason. There was a time when I wanted to give up on life but something came to my mind that I should hold on I have a purpose in life here I’m today with a very big dream to save a life out there….
I’ve lived with CF for 34 years nothing can pull or bring me down. I now know what CF is its time I give back to my CF community and save a life out there and make sure people understand what CF is especially to the blacks out there who think that cystic is meant for white people only, not knowing its there to everyone.
My goal and dream is to teach people about it and make awareness of it to the black community and make sure they get proper treatment. Help them know we lose a lot of lives because people don’t know about it. The painful part is we are being misdiagnosed of it once faced the same problem about it they thought I had TB or KWASHIORKOR because they thought it wasn’t meant for blacks. But its time we change that and save lives out there….We have to create more awareness programs on social media, tvs, radio create billboards, spread the word everywhere, teach people about it. Have early child hood screenings.
I want to start seminars for people or parents with kids who have CF. My goal is to reach everyone out there we all know black community is poor sometimes its difficult for them to access social media we need to reach to them physical have pamphlets. We must teach them what CF is. I want to create support groups, counselling sessions to parents. My goal is to save a life out there not only blacks but everyone with Cystic Fibrosis. I know what its like to live with CF. I’m looking forward to making sure I push this through so that when my time to rest comes I would leave a legacy and would save a life out their.
I pray and wish I could earn a living so I can make sure I push my project. I want my own place to stay as I’m crashing with my brother who is also struggling. Everyone everywhere God has a purpose for you. Believe, pray and trust in Him and He shall be with you all the time.
(Written by Ndumiso, edited by Clare Emms)
Members of the CF New Frontiers Committee (CFNFC) engaged in a meeting with representatives from Vertex Pharmaceuticals on 16 September 2020.
Representing South Africa on a national level, the CFNFC attendees consisted of doctors specializing in paediatric and adult treatment of CF, the SACFA Chairman, as well as the CFNFC Chairman.
The meeting was of an introductory nature and CFNFC attendees :
- Conveyed our interest in obtaining Vertex treatment for all CF patients in South Africa;
- Provided background regarding the current South African economic, healthcare and regulatory environment, in order to give Vertex a better understanding of our plight as the collective CF community;
- Outlined progress on our comprehensive CF registry; and
- Explained our existing infrastructure for performing clinical trials.
We are looking forward to engaging further with Vertex and other stakeholders, in the upcoming months, to forge strong relationships and work together, so that we can achieve every CF family’s goal – affordable and life-changing treatment.
Vertex were not able to commit to a timeline for access to Trikafta, but indicated that it will be a slow process.
Ndumiso is from Zimbabwe, he now lives in Johannesburg, and is the first black CF person to join the CF Association. Ndumiso’s story is very enlightening and shows his strength and bravery through adversity. He has been brave enough to write in English, which is not his home language, so that we can all get an idea of his CF journey so far.
This is Ndumiso’s story
It began when I was 3months old, born in Mpilo hospital in Zimbabwe city of Bulawayo…Born in a family of 3 girls and I’m the only boy in the family and I’m the first born of the family. Both of the girls are healthy and beautiful. We were raised by a single mother who struggled to take care of us as she was not working it was really difficult for us to survive. She struggled so much as she had to take care of us and me on the other hand with my condition. It was a tough road for the family as my mother was supposed to be a mother and also a father at the same time. She had to be a nurse and a doctor – for my situation. My life was very difficulty when I grew up. I can never really think of my childhood, my teenage stage- not knowing what its really like to be a teenager because I was always sick and laying in a hospital bed. My friends pushed their lives forward, I was behind in everything I did. I tried by all means to fight it and live a normal life like everyone else, but it was very difficult as I struggled each and every minute to breath.
School life for me
I never enjoyed my schooling as I strived to push forward and be like other kids. I was always behind with school work- sometimes skipping classes as I couldn’t manage to do anything at school and I needed a lot of attention from my family and friends. I couldn’t eat anything as I had a stomach problem, I wished I could do sports, but no Asthma was there. It was a very difficult life for me I can never imagine what I went through how I overcame all these challenges. Tried by all means to fight all odds to do what other kids where doing but felt scared and shy at the same time as the other kids would laugh and mock me for the way I was with a big tummy and always coughing. I was so embarrassed the way I was looking I would run to the toilet and hide cry alone not knowing what to do. Well life had to go on despite all the challenges. I thank my family and friends so much, who were so supportive and loving to me and most of all I thank the most amazing woman, my mum. Of course without her I don’t know what I would’ve done. My lovely sisters, their love meant a lot whilst I took their mother`s attention. How could I forget my aunty who gave up her family and her time to look after me alongside my grandmother. Finally would love to thank everyone who played his/her roll in my life some contributed financially and others with their time. I pray for God to bless them…Last but not least it’s all thanks to doctor Nyathi who took it upon his shoulders to look after my life till today…
(continued in Part 2)
The Central Region Cystic Fibrosis Association invite you to join our online quiz night fund raiser to help make a difference to those with CF. Cash prizes for the winners
Invite your friends and come have some fun while supporting a great cause.
BUY YOUR TICKETS TODAY!
Date: Friday 28 August 2020
Cost: R100 per person/team
Hello, I’m Fawn, Cystic Fibrosis owner, double lung transplant recipient and lover of life.
I was born in Zimbabwe but I was the only CF patient in the country and had to travel often to see specialists and get my meds from SA. I eventually relocated after highschool and have been here ever since.
Growing up with CF was tough, but when you don’t know any better, it’s manageable. I missed a lot of school as I had to have IV treatments for 2weeks every 3months and I wasn’t ever able to partake in any sports. Breathing was always a struggle and putting on weight was just a nightmare. I eventually deteriorated to a point where my lung function was less than 20%, I was on high flow oxygen 24/7 and I had a tube inserted into my stomach to feed me (PEG). I also had to have an insulin pump for my diabetes, a permanent IV catheter (port) and I was too weak to walk much further than a room at a time.
My days consisted of literally just trying to stay alive; throwing up throughout the day, eating what I could, having nebulised treatments 3 times a day and physio.
I was listed for a double lung transplant and a donor was found 8 months later in 2013! My 8hr surgery went well but I had A LOT of setbacks afterwards and it took 3 months in hospital to recover. Since then, my breathing has been amazing, my weight is more stable and I’m completely tube free and “healthy”.
I met the love of my life who I will be marrying at the end of the year. I started my own digital marketing agency and bought a beautiful little house. I also co-founded an organ donation awareness charity with 2 friends.
I am grateful every day for the life I am able to live thanks to my donor. I still have CF and all the issues that go along with the disease but my “new” lungs have given me a first chance at life and I am living it to the fullest!
Fawn Rogers – Marketing Director of TELL (Transplant Education for Living Legacies)
www.tell.org.za FB/TW/IG @tellorgza
Fawn wrote this month’s blog post on Nutrition. Click here to check it out!
As a CF who has always struggled with maintaining weight (even post transplant) I know my way around a kitchen and food aisle better than most.
One of the biggest issues with having to eat SO MUCH is that we tend to run out of ideas on what to eat. We get bored of the same old snacks and with boredom comes decreased appetite.
Everyone knows, you eat more when it’s delicious!
So, here are a few cost-effective snack ideas that you can include in your day to day eating plan:
Peanut butter on apple slices
Veg sticks (carrots/celery) and hummus
Cottage cheese with cucumber or tomatoes on rice cakes
Cream cheese on crackers
Provitas, cheddar, bovril
Sweet Corn with butter
Caprese salad (sliced tomatoes, pesto, mozzarella)
Meatballs/ cocktail sausages / fish fingers
Liver pate and salticrax
Snack platter – cold meat, olives, cheese squares
A bit of cook time:
Fried halloumi with sweet chilli sauce
Pancakes with loads of butter and honey
Scones with jam and whipped cream (keep a can of whipped cream in fridge – also great with hot cocoa)
Mini frozen pizzas
Pre-made baked goods:
Banana bread with lots of butter
Bran muffins (can freeze these if you make a big batch)
Anything on toast:
Avo, tuna, marmalade, peanut butter, eggs, nutella, baked beans
You’ll notice that there are no crisps.sweets or chocolates on this list. For me, those are treats you have once in a while – not a wholesome snack.
Remember, these snacks need to be consumed over and above your 3 meals a day!
My eating regime goes a little something like this
8am Morning tea + biscuits/rusks
9am Breakfast: 2 slices low GI toast with cottage cheese (or eggs and bacon on the weekend)
10am Breakfast snack: Muesli and yogurt or a smoothie
12pm Lunch: Left-over dinner or toasted sandwich
3pm Tea snack: One of the options above
5pm Pre-dinner snack: One of the options above
7pm Dinner: Protein + veg + fat/carb eg steak, salad and fries.
8pm TV snack: Popcorn
In between all these meals you’ll also have to get your ensure/fresubins in. Post-transplant I don’t have these any more but pre-transplant I would have them with all my snacks.
Preparation is key, have a list of all your favourite snacks ready so that whenever you hit the shops you don’t have to wander around aimlessly wandering what to get and then end up putting nothing in your trolley. With a list of ideas by your side, it’ll make life much easier!
Fawn Rogers – Marketing Director of TELL (Transplant Education for Living Legacies)
www.tell.org.za FB/TW/IG @tellorgza
Click here to read Fawn’s story
Where my story began
I was diagnosed with Cystic Fibrosis at birth when I was born with a meconium Ileus, with the delta F508 mutation. My parents were told I would live till I was 7 years old….both being Engineers, and determined individuals, they decided to do everything possible to ensure that I would outlive that age.
The approach that was taken by my parents, and one which I continue today, is to be very disciplined with all aspects of my medical treatment – not only do I consider my twice daily nebulizer and physio treatment to be a non-negotiable and unavoidable part of this treatment, along with all the pills, but I consider exercise and diet and monitoring of my “medical stats” an integral part of this regime.
I always have been very active, and this was instilled at me at school where it was compulsory to participate in a sport each term. This continued when I went to university, where I regularly went to gym, and being a geologist, meant I spent a lot of time hiking and carrying rocks (literally!).
Diagnosis of CF-related reactive arthritis
Towards the end of 2009, things changed. After an initial misdiagnosis of gout, I was eventually diagnosed with CF-related reactive arthritis, which presents as inflammation in the joint around my big toe or in my Achilles, about 2 weeks or so after I’ve had an infection. Long story short – I had all the side effects to the first treatment I was put on (with little to no benefit) and the second one caused all manner of other, very serious side effects, so now I only take medication if I have a flare up. The unfortunate result of the reactive arthritis was that I couldn’t exercise in the way I had been before (running, cycling, yoga), and I was in a lot of pain. I all but gave up on exercise as I only exercised when I could, and was completely disheartened by how my fitness levels fell.
My CrossFit journey
Fast forward to 2016. My husband Gus had started something called CrossFit in 2015, and had been trying to get me to start. I was completely intimidated…. all these extremely fit and strong people, and there I was. I kept thinking I needed to be fit to start it, but eventually bit the bullet, and turned up. Because of the arthritis I couldn’t run. I couldn’t skip. Problem? Nope! I could row, or use the assault bike (as horrid as it sounds) instead. Flare up with my foot? No issue, the exercises could always be changed accordingly and I can keep on training. Within the first month my FEV1 (one of the measures of lung function) had increased by about 4%, and when I was due for my next bone density measurement, this had increased as well (the benefits of lifting weights). My FEV1 currently sits around 55% but I find that even if this drops slightly, I can keep training.
Overall, even though I have had a number of CF related infections since I started, these have not hit me as hard as they would have previously. Although I know that CrossFit won’t be for everyone, having the base level of fitness that CrossFit gave me fundamentally allows my body to handle infections better. On top of this are the obvious mental benefits, and the phenomenal community – I’ve made new friends for life through CrossFit! At nearly 40 years old, I can confidently say I have never been in such good shape fitness wise, and I am convinced that by having found CrossFit, I have extended my lifespan, and have improved my quality of life!
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 firstname.lastname@example.org
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 email@example.com 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