Tribute to Dr Klugman
My story – Dr Sue Klugman
I joined the paediatric CYSTIC FIBROSIS clinic in 1989 as a very part time job, for four hours a week ,when the clinic was short staffed and needed an extra pair of hands. The whole field was new, strange and overwhelming to me. When Dr Richard left to go into private practice he asked me to head the clinic up.
What started as a four hour a week clinic soon became a very full time job, and not only did it occupy my work life but it began to infiltrate my home life and that of my family, who all involved themselves in one way or another.
It did not take long to realise that our dear little ‘charges’, born with a condition that was here for life, deserved better services than the four hours a week that were on offer. Ward 284 somehow became “claimed as ours” and the local CF Association kindly renovated for us and our “NEW HOME” in Ward 284 was born.
.I wanted to be more available to the patients, have more frequent contact, be more available after hours and on weekends, and be at the other end of the telephone should issues queries or problems arise between monthly visits and between Tuesday clinic visits.
I wanted our ward to be a welcoming, friendly, nurturing place – a ‘home away from home’ where our hospitalised patients and their families could escape for some quiet time and a place to relax. A place where the outpatients would feel fully comfortable.
The pharmacy and additional help
At one stage we even had our own pharmacy at the clinic which made the whole experience so much more pleasant and ‘patient friendly’ , BUT this service unfortunately ended once the CMJAH pharmacy services were forced to consolidated.
The CF Association kindly pays for a private social worker to attend our weekly clinics in order to offer consistent psycho-social care to our dear families. Thank you to SARIT SIFRIS for her superb service and giving of herself so selflessly and with such passion. With time a private dietician was employed to make consistent dietary input more accessible-someone with whom our families could create trust, a rapport and a mutual understanding of the dietary needs and financial constraints of the individual families. Thank you FAZANA KADER for your ongoing input and commitment.
The Spaza store
Realising that good nutrition is so essential in CF care,we saw the need for a ‘spaza store ‘ in our ward . It is the most unique spaza store in the world! One where the only payment expected in exchange for wholesome protein rich foodstuffs, plus some staple foods, is attendance at the monthly clinic. We hope that these small monthly packages help in some small way with the nutritional needs of our dear little people and also give a message of love to them, and help them to realise that we care as much about them as people, as we do about their medical issues.
The concept of the spaza store fills many peoples hearts and the food thankfully keeps coming in from various and often unexpected sources. Much thanks and deep appreciation goes to DISCHEM pharmacy who provide us with monthly donations of PEDIASURE and ENSURE, which supplements what the hospital dietetic department is able to supply (or often does NOT supply). Thanks also goes to ABBOTT (SOLVAY) for their annual assistance with our “care packages” and for their welcome visits to the clinic when they’re able to pop in.
The Dream Room
Our most recent acquisition is the “dream room” – sponsored by “Reach for a Dream” and funded by Standard Bank”. It includes a children’s play-paradise stocked with lego, toys, puzzles, dolls a ballpond and a play station. COVID and infection control has had to limit full use of the room but hopefully very soon it will be put to better use again. What started as a job for me, rapidly became a passion and soon CF care and the CF family at large took up larger and larger chunks of my time and heart.
The clinic and patients grew from strength to strength
As time passed our staff members began attending international and local CF conferences receiving valuable input, advice and a helping hand from overseas experts and our services and knowledge expanded to become a clinic of “excellence” on par (in my biased opinion ) with many of the acclaimed international clinics .
Our patients fortunately became older and were no longer welcome (according to the hospital management) at a paediatric clinic. As a consequence an adolescent and then later an adult clinic needed to be “born” and was expertly run by DR CATHY BAIRD and by DR LINDY GOUWS, both of whom offered superb service to our adult patients.
Thankfully the adult clinic is now larger than the “mother” paediatric clinic. To me this signifies major progress and major advances in our understanding and management of the condition. It is so heartwarming that the necessity for this clinic arose and that so many of our patients are reaching adulthood today. It has been my absolute pleasure and privilege to witness and experience these monumental and historical changes and to have been part of the process.
To all my patients
It has been my honour to see so many of my former patients reaching adulthood and living fulfilled, productive and full lives. It has been my delight to become the ‘grandmother’ on multiple occasions to newborn babies born to my former patients or to be called in to check these babies postnatally.
It is heart warming when my former patients pop in to our clinic on their own clinic days or whilst hospitalised just “to say hello” or to catch up or to let us know how they are doing, and when they send graduation photographs or a wedding invitation. It has been historic and enlightening to see how with time we have realised that our entire rainbow nation is affected by the condition, which in earlier years was thought to only affect caucasians. It has been a challenge to teach our students and junior staff that all who cough and struggle to gain weight do NOT necessarily have tuberculosis or HIV, but to think wider and to include CF as a consideration in the diagnostic work up. My admiration for all of you is immeasurable. You are all brave and heroic warriors, facing each new day with courage and determination.
It has been my pleasure and privilege to work with, and learn from each one of you, and I have learned huge lessons on how to confront life’s challenges and adversities and how to succeed at it. THANK YOU to each one of you for what you have given me and for the life -lessons that you have taught me. EACH one of you has taught me something valuable.
And to those reading the magazine with whom we have not succeeded in “winning the war” I salute each of you for your bravery and the the “battle “that you all fought so courageously. I think of all of you and your precious families so often. I will never forget you and your children and your presence is ingrained in mine for eternity.
Wishing you all luck and the best of health for the future.
I will miss each one of you.
To those I worked with
My thanks also goes to PROF WHITE,DR WEIL and DR HYSLOP, with whom I have worked as a close family for the last 15 years and welcome to DR RIAZ KHAN who has recently joined our team. Wishing you many happy years in our wonderful clinic. I hope that you feel as excited by the clinic as i was when I first joined the team.
And of course to DRs EVERLENE KEGODO and SAM OTIDO, our visiting pulmonology fellows from UGANDA. Hopefully you can take what you have learned back home with you where you will both open successful CF clinics and be able to help many many people; some who at present are undiagnosed and not yet recognised as having the condition.
How can I not mention KHUMO and her amazing team of physiotherapists, who can rescue the tiniest piece of stubborn thick mucus from the furthest and deepest parts of the lung, and who have relieved and saved many “drowning” children by mobilising their secretions.
And KUDOs to our dedicated team of nursing staff, headed by SISTER EMILY RAKOSA who so readily and lovingly give of themselves so fully, lovingly and willingly to each of our patients.
LASTLY thank you to Mr Alan Dunn and SACFA for your support over the years.
I leave with a real sense of fulfilment and satisfaction at what our multi-disciplinary team have achieved over the years.
From the four hours a week clinic to what it is now, a 24/7 facility, 365 days of the year. In my humble opinion, a service of excellence (and the most well run and loving clinic in the hospital)
I leave all of you with all my blessings.
Dr Sue Klugman
Jason van’t Slot, a Cystic Fibrosis warrior, extreme cyclist and professional public speaker, will be attempting to break a CF record for his Everesting attempt, while also creating awareness and raising funds for CF.
“FIENDISHLY SIMPLE, YET BRUTALLY HARD. EVERESTING IS THE MOST DIFFICULT CLIMBING CHALLENGE IN THE WORLD.”
What is Everesting?
The concept of Everesting is fiendishly simple: Pick any hill, anywhere in the world and cycle repeats of it in a single activity until you climb 8,848m – the equivalent height of Mt Everest.
Everest isn’t a number, it’s a symbol. It’s a symbol for something momentous and stupendous in your life. It’s a symbol representing a long term goal, something to strive toward, something to conquer. It’s a symbol for supporting a charity, a friend, a crew member. It’s a symbol that pulls together a community, draws in bemused onlookers and speaks to the magnitude of a challenge to people outside of our sport.
Whether you are climbing toward a historic measurement – or an updated number that has moved a few inches (8848.86m) – the goal remains the same; take on a big challenge in life, and fight like hell.
Why is this such a special event?
Jason will be the second person in the world with CF to attempt this record and will be aiming to beat it. The first CF person to complete this challenge did so only on their second attempt, after gaining access to Trikafta.
In addition to this Jason will also be raising funds to help SA Cystic Fibrosis Association (SACFA) facilitate access to life-changing drugs such as Trikafta, which are not yet available in South Africa. Trikafta is a drug which corrects the way the defective CF gene functions. It has helped CF patients to come off the transplant lists, and even helped some to breathe without oxygen for the first time, within months of starting treatment.
The funds raised will also go towards maintaining an updated South African CF registry, which provides statistical data on CF patients necessary for negotiations with Vertex Pharmaceuticals and other stakeholders, including medical aids and the South African Health Department.
How can you get involved?
Jason will be involved in a live online event with The Big Positive Guy on Thursday 11th February at 7pm where you can listen in to find out more about him and his Everesting goal! This venture is an amazing opportunity to create awareness for CF in South Africa, raise funds towards gaining access to Trikafta and maintaining the registry, as well as showing the CF community as a whole that we are capable of great things. What a great opportunity to come together as a CF community to support something truly momentous!
For more info or to donate, click here: https://www.givengain.com/cc/everest-challenge-to-breathe-life-into-cystic-fibrosis-lungs/
‘Living with cystic fibrosis challenges one daily, I believe one must rise up to these challenges, manage your approach to living with a life-threatening lung condition, breathe in life and face these challenges with your head held high and be proud of the way you lived your life. I never chose to have a life-threatening condition. But I choose to be a victor, and not a victim of the disease’ – Jason van’t Slot
Navigating nutrition alongside your young child with CF can be very daunting, especially through transition phases. We chatted to Liezl Compion about a healthy parent approach to CF nutrition. Liezl lives in Still Bay and is a registered dietician and mom of three boys. Her youngest son, Christopher, has CF and is currently 8 years old.
1. Liezl, nutrition is such an important part of CF health and can often be a big challenge and stressor for parents with young children. What are some of the most important lessons you have learnt, as a mom and dietician, on creating a healthy family focus on good nutrition?
Just to give you a bit of background, Christopher is now 8 years old and he has always been underweight for his age and height, and therefore he has had overnight feeds via a MICKEY (tube in his stomach) to help with weight gain since the age of 5. So, I have had my fair share of worrying about nutrition and getting in enough calories to help him gain weight.
What I have learnt is that I can try my best, but I should do my best to also not be hard on myself if things don’t go the way I want it to go. I can offer the right foods but I can’t force them. Eating should be enjoyable and it is just as important to focus on a healthy food environment than it is on just getting in calories. Basically, the more I stress, the worse it normally goes. So, relax and take a deep breath and offer healthy yummy high calorie foods and snacks. If your child doesn’t feel like a snack they will most probably catch up with the next meal. You can also offer a glass of milk, a small smoothie or a nutritional supplement as a snack. Include a variety of food as much as possible and try to avoid overfeeding on just one food group because that’s what your child prefers. Remember, if they only eat bread and drink lots of milk there won’t be any desire or hunger for other foods. Allow treats like chocolate or biscuit after meals or when you go out for a date/special occasion, not instead of a meal. Also make sure you involve your children in the cooking process and allow them to experiment with different foods. This will encourage positive meal times and happy memories around food.
2. The weaning phase can be specifically difficult to ensure that your baby with CF is getting enough nutrients, and now from solids. What are some good go-to foods you can recommend for this phase?
I know how hard this phase can be as children can often be fussy and we as moms feel they are not eating enough, especially when they spit out or refuse food or start to eat by themselves. Here are a few ideas
Offering as much of a variety as possible is crucial to develop their taste buds for all kinds of tastes, not just sweet foods.
Rice cereals is a good starter as weaning food as it is non allergenic and either breast or formula milk can be added to it.
You can also start with veggies, especially starchy vegetables, fruit, pureed meat or pureed oats. The order in which foods are introduced is not as important as introducing a variety.
All kinds of veggies e.g., sweet potato and spinach or butternut and broccoli or carrot and potato. You can add some salted butter, olive oil or coconut oil and a little salt for taste.
Fruit like mashed banana, peach, cooked apple or pear are always a winner. Add some unflavoured coconut oil for extra calories and double cream yoghurt to make it a more substantial meal.
Mashed avocado mixed with salt. This can also be added to mashed fruit to make it slightly sweeter.
Oats, softly cooked or blended after cooking, mixed with full cream yoghurt and fruit is a delicious breakfast.
Add protein like softly cooked chicken or soft lamb to veggies and then mashed lentils, butter beans and chickpeas soon after that.
Mashed potato, squash, butternut or sweet potato with added olive oil, butter or coconut oil is normally well tolerated.
Try to avoid sweetened yoghurts and rather sweeten double cream yoghurt with mashed fruit.
Boiled mashed egg or scrambled egg with added oil or butter is an ideal meal. Egg can be introduced from around 7 months.
Just keep an eye out for any allergies as some children cannot tolerate egg and dairy products at an early age and it will have to be introduced later.
3. Even young children without CF are often picky eaters. What would your advice be to a CF parent on boosting nutrients and fats when their young child is fixed on only eating a limited variety food?
We all know it is important to add healthy fats to our diet. In CF fats are often not well absorbed and important vitamins are stored in these fats like Vit A, D, E and K. Healthy fats are very important for most of our body’s functions and preventing the cells from getting inflamed and becoming sick. Healthy fats are a wonderful source of nutrients for the brain as well. Fat is also very high in calories and is the best way to add extra calories to a meal. Always remember to add extra Creon for the fat that you add so that it will be well absorbed.
Sneak in fats by adding it to their favourite meal. Good sources of fat are MCT oil, coconut oil, olive oil, flaxseed oil, salted butter, avocado, nut butters, olives, cream, cream cheese and mascarpone. MCT oil and coconut oil can be added to any liquid e.g., porridge, smoothie, mashed potato, stew or soup without affecting the taste. Salted butter is tasty to add to veggies, mashed potato or sweet potato, added to crackers, bread or to porridge. Peanut or nut butters can be added to smoothies, porridge, or thickly spread on bread or crackers. Make sure you use good quality meat with some fat e.g., lamb, chicken with skin, steak with fat and bacon rather than lean cuts. Full cream milk and yoghurts, cream cheese and full cream cheese are also good ways of getting in healthy fats, protein and calcium.
If your child refuse to eat fruit and veg try serving it raw e.g., raw carrots, cucumber, peppers, frozen peas and corn and cut up the fruit and veg into bite-size pieces. Always make sure you add some fruit or veg with every meal or as a snack. Even a few pieces will benefit your child. For example, blueberries are very high in polyphenols that fights infections and you only need a few a day. Fruit can also be cooked and mashed and added to dishes like stews and porridge. Smoothies are a great way to incorporate fruit and even vegetables like carrots, baby spinach leaves and avocado in the diet. If your child refuse to eat meat, offer other proteins like eggs, beans, biltong, droëwors, dairy products or lentils hidden in stew, sauces or spaghetti bolognaise sauce. Never neglect to give them any protein as it is crucial for the development of all parts of the body especially the brain and muscles.
Make sure you include starch with at least every main meal. This can include potatoes, oven chips, sweet potato, rice, corn on the cob, cereals like Pronutro, Futurelife, Weetbix, oats, Tasty wheat, mieliepap (maize), as well as wholewheat or brown bread, Provitas or wraps. All these are good bases to add fat like cream cheese, butter or nut butter. Try to avoid high sugar cereal as a rule.
Good snacks that fussy eaters normally like include popcorn with butter and salt, salted crisps, Oaties, cheese, nuts, crackers and cheese, peanuts and raisins, dried fruit, biltong, droëwors, fruit, yoghurts. When kids are eating very limited sources or are underweight you can include high calorie supplement drinks e.g. Pediasure and Nutrini(1-10 yrs) or Infatrini(up to 1 yr) daily. It is good to speak to a dietitian regarding the amount your child needs to meet their requirements. It is best to offer these away from meal times (1-2 hours), at bedtime or as a snack as it can reduce their appetite for food.
4. Finding snacks for toddlers with CF that actually add extra fat and salt, but are still relatively healthy can be tricky. What has your experience been with good go-to snacks that also tick the CF-boxes?
Cheese, salted nuts, peanut butter on cracker bread/cream crackers/salty cracks, olives, fruit and full cream yoghurt, biltong, droëwors, popcorn with added salt and butter, small smoothie, nutritional supplement like Pediasure/Nutrini, salted crisps, peanuts and raisins, avo on toast, marmite and cheese or cream cheese on crackers, raw veggies dipped in hummus or guacamole.
5. Once our toddlers are at an age where they can understand more about their condition, it is important to also talk to them about their unique nutrition needs, especially compared to friends or siblings. What would your advice be on the most important things to communicate in this conversation?
Here are a few ideas on phrases you can use
– Your body is working harder and using up energy faster than your friends.
Your body needs more petrol to run as the petrol runs out faster. This makes you special and you are lucky that you can eat more than your friends.
Our food needs enzymes to be digested and absorbed into your blood. Your pancreas can’t get all the enzymes to your gut so therefore you take Creon.
It is also important to help them understand the importance of eating foods that nourish and keep the body healthy rather than just fill the tummy. Help them to understand:
That food is just as important as medicine to keep our bodies healthy.
That healthy food is tasty.
That you should listen to your body and nourish it accordingly. Sometimes you feel like sweets but actually you are just very hungry or you feel irritated, but it’s because you are hungry.
Good fats are important to fight inflammation and feed the cells.
How to recognise when you are thirsty and to drink enough fluid.
6. Are there any specific resources, books or websites that you have found helpful for recipes, etc on the CF-parent journey?
Here are a few links with helpful tips and recipes:
- Chef4CF resources and recipes: https://www.chef4cf.com/
- Free downloadable CF Recipe Booklet: https://www.cff.org/This-Eating-Stuff-is-Hard-Work-Recipe-Book.pdf
- Some kid-friendly recipes – Nemours KidHealth: https://kidshealth.org/en/parents/about-cf-recipes.html
- Great resources in general, but specifically CF Kitchen recipes: https://www.everyday-cf.com/cf-kitchen
- Cystic Fibrosis Australia Booklets on Nutrition, Snacks and age appropriate meals : https://www.cysticfibrosis.org.au/about-cf/facts,-figures-and-publications#Nutrition
- Royal Brompton & Harefield NHS Foundation Trust: https://www.rbht.nhs.uk/our-services/paediatrics/information-for-parents/childrens-diet/nutrition-for-children-cf
- American Cystic Fibrosis Association Nutrition tips: https://www.cff.org/Life-With-CF/Daily-Life/Fitness-and-Nutrition/Nutrition/Good-Nutrition-for-Kids-With-CF/
* Please note that the aim of this article is to provide general advice and should in NO WAY replace the counsel of your child’s pediatrician and dietician. It is very important to adhere to the counsel of your child’s pediatrician and dietician in managing the unique needs of your child with regards to Cystic Fibrosis.
Written and compiled by Grethe Roets.
Grethe is a freelance writer from Morningside, Johannesburg. Her son, Ruach, was diagnosed
with CF at 7 months.
As a physiotherapist with a special interest in CF and over 20 years’ experience one of the most common questions I get asked is, “What exercise should I be doing? Or what is the best exercise for my child?” This is both a simple but complex question.
My simple standard answer is always, “Whatever exercise you enjoy!” The reason behind this is quite simply, if you enjoy something you will do it and more importantly you will want to do it. Some people might love swimming while others running. I cannot tell someone who hates to run that that is what they should be doing. I know full well that it will all start with good intentions but soon fizzle out. So, rather focus on something that you love, and the rest will follow.
However, exercise in CF is not as simple as that answer. Extensive research into the effect of exercise training and physical activity in the healthy child has demonstrated physiological and quality of life benefits. Guidelines for exercise testing, prescription and training for healthy children are also well documented. However, by comparison, there is much less evidence demonstrating that children with CF achieve the same level of benefits as their healthy peers, and guidelines for exercise are still being developed. Current guidelines for the physiotherapy management of children and adults with CF suggest that regular exercise and physical activity be prescribed in conjunction with airway clearance therapy (ACT) and inhalation therapy. The rationale is that exercise may enhance sputum clearance, improve, or maintain lung function, reduce breathlessness, increase aerobic capacity, and muscle strength, improve bone health and ultimately quality of life. Regular adherence to exercise and ACT is variable in both adults and children, with time required to complete ACT, nutritional status and progression of the disease the key factors that influence exercise capacity, and willingness to participate in any form of exercise or physical activity- hence my reasoning for doing an exercise that you enjoy.
Endurance training has been found to be the most popular intervention and is effective at increasing lung function and improving breathlessness and quality of life, while strength training improves muscle strength and size, and weight gain. In seeing this when looking at any exercise prescription one needs to include both endurance and strength training. These should always be monitored by a professional and individualised.
Studies at Great Ormond Street Children’s hospital have shown that “Supervised and in-patient programs for children with CF produced the most improvements in exercise parameters, with less dramatic effects noted in part-supervised or unsupervised programs.” When they started their Frequent Flyer programme, which allows those that spend a fair amount of time in hospital per annum on IV’s to start exercising with a trainer at their local gym (for free) they found a 25% reduction in IV antibiotic usage, quality of life improvements and maintenance of lung function and growth (in children) Feedback from both children and parents was very encouraging, with families reporting that their children had been able to spend more time at home and school and experienced less of a dip in their general quality of health. Children reported they were now able to exercise at the same level or sometimes even higher than their peers. These programs present an interesting new model of physiotherapy care focused on incorporating structured, supervised exercise programs into children’s CF management.
In South-Africa this management of structured supervised exercise is unfortunately not free so my advice would be to see someone who has knowledge of exercise prescriptions in CF on an ad hoc basis who can help with home programmes and tailor it accordingly. This exercise prescription should incorporate three core components: exercise testing, exercise prescription and exercise training. This person is also someone who the individual will be held accountable to and therefore will hopefully stick to the programme.
So, in summary, exercise is medicine! Make it a lifelong commitment and reap the rewards!
B.Sc. Physio. Pr 0089044
(With thanks to Sean Ledger, Founder of the Great Ormond Street Frequent Flyer Programme.)
What is the registry for?
Publishing of our first annual CF registry report for South Africa is testimony to the commitment of all CF doctors and CF families in our country, to promote the welfare of all our patients. The benefits of the registry are not always fully understood and appreciated by the public, so this report will go a long way towards clarifying the critical role of the registry in the years ahead. The emergence of promising new medicines such as Trikafta® targeting specific mutations, highlights the need for statistics on the CF population, in particular the CF mutation breakdown.
Who is it for?
The annual report is aimed at doctors, CF families and other stakeholders such as medical aids and the national Department of Health. The report analyses and interprets all the data contained in the registry to provide a better understanding of the status of CF patients in SA, and to benchmark how SA is doing in comparison to international trends.
Thanks to those involved
SACFA offers a special word of thanks to Dr Zampoli, the registry steering committee and authors of this report for getting the CF Registry off the ground in early 2018. Over the past 2-3 years an immense amount of work has gone into setting up the infrastructure and capturing medical information for most people living with CF in SA today. SACFA is committed to ensuring the sustainability of this project and appeals for the support of the CF community, and encourages everyone diagnosed with CF to sign up to the project. Tracking the health of people with CF over time is key to learning about where problems exist and how we can improve the care and well-being of people and families affected by CF in SA.
(Written by Alan Dunn, Chairperson of SACFA)
Click on the links to view the reports:
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)