Bonny Gouws: My Fight Against CIDP
Recently Team Talk chatted with Pam Barnett who shared the difficult journey of her niece Bonny with us. Bonny has recently become bedridden with an autoimmune disease called CIDP or Chronic inflammatory demyelinating polyneuropathy, which is a neurological disorder characterized with progressive weakness and impaired sensory function in the legs and arms.
Bonny was diagnosed in August in 2022. This is her story.
Bonnita Laverne Barnett was born on 21 April 1971 to Glenda and Robert Barnett in Port Elizabeth. She was a happy, chubby baby, who grew into a happy, chubby child. When Bonny was 6, they moved up to Johannesburg because Robert was working for Ford, and there was a position available. When she was 9, her brother Lee was born, and the family was moved back to PE. Her mother struggled with addiction and life had become very difficult, with young Bonny spending her time bringing up little Lee, and cooking and cleaning for her family, while Glenda was in and out of Rehab.
When Bonny was in Grade 11, they moved back to Johannesburg, and she finished her education there, but returned back to PE to find work and moved with her grandparents. She then met and married Duane Gouws, a mechanic and they began their life together. After some time, Bonny and Duane battled to fall pregnant, and it was during this time that a pap smear revealed that that Bonny had abnormal cervical cells, and this problem persisted for a good few years, with Bonny suffering miscarriages, or just failing to fall pregnant at all. Then it was discovered that some of the cells were cancerous, and she had laser treatment to remove them. Fortunately, the doctors managed to remove all the cancer and it did not reoccur. But she continued to be dogged by ill health. Kidney infections, back problems, and other health issues seemed to be her constant companion.
Then in 1998, at the age of 18, her brother Lee was killed in a motorbike accident. The family was devastated. Lee was their blue-eyed boy, and they were rocked to their core. Glenda, consumed by grief, lived in a twilight world of tranquilisers and anti-depressants, and could barely function. By this time, Glenda and Robert had been divorced for a few years, and Rob worked in Johannesburg. Glenda had moved in with Bonny and Duane in Port Elizabeth, and so despite her own consuming grief, Bonny picked up the reins and tried to draw their fragile family together, but her mother became increasingly more difficult to live with, as she raged against God, her ex-husband, and Duane. Life in the Gouws household became stressful and tense, with Bonny in the middle, never knowing what would spark a war of words between her mother and husband.
Then, Glenda’s elderly mother passed away, and left her house to Glenda, she being her only surviving child, and it was a great relief for the Gouws family when Glenda moved out. Robert in the meantime had remarried, and his new wife was expecting their first child. Bonny was ecstatic. The little boy was a joy.
The Gouws family moved back and forth from PE to Johannesburg, but they were living in PE in 2006, when further devastating news ravaged the family yet again. Robert had collapsed and died of a heart attack while playing Action Cricket. Bonny’s feet were swept out from underneath her once more, but her enduring strength and determination saw her get up once again to defiantly face the world and all it threw at her.
Miraculously, after years and years of trying, in 2009 and at the age of 38, Bonny discovered she was pregnant. This time the pregnancy went full term, and she gave birth to a rambunctious ginger haired, blue-eyed boy, Declan. At last, they had their long-awaited child. It was a miracle. Their family was now complete. Declan was Bonny’s joy and delight. He was the image of his father and grew to be boisterous and chatty, interested in everything his father did, and loved engines and machines and motor bikes.
Duane had owned few motor bikes in his day, and as Declan grew older, Duane and Bonny managed to get him involved in Motor X, and weekends saw the family out at the Rover Motor X course. Declan loved the sport, and Bonny and Duane made friends with other enthusiastic parents, and it was at this time that they met Dr Jacques Theron, who was a practicing physician in Port Elizabeth and an ardent biker at Rover himself. Their acquaintance was mostly in the context of the Motor X racing, but little did Bonny know how important this acquaintance would turn out to be in the years to come.
Back in 2003, Bonny’s uncle Cecil (CJ) had immigrated to the UK, with his wife, Pam (myself) and our 11 year old daughter. We returned on holiday after about 2 years, after Robert’s passing, and bought a house to move our aging parents into. CJ’s mom, Bonny’s granny Jean, who she had lived with all those years ago, had been living with CJ and myself for many years, prior to us leaving for the UK. Robert agreed to take her in to live in his and his new wife’s home in Johannesburg, but when he passed away, his wife decided to sell, and so Bonny's granny found herself homeless.
Bonny took her in for a while, but Jean was forgetful and kept leaving taps on to overflow, and forgetting to switch stove plates off, so it was a dangerous situation, especially if Bonny and Duane were at work, and they were concerned that she would burn the place down, so they arranged with CJ to place her with a nursing sister, who looked after the elderly in her home. She had only one other person to care for, so CJ’s mom got prime care. But when we bought this new house, we moved her in, and my dad moved into the granny flat a few months later. It all worked out very well, although Jean was still leaving taps on and stove plates.
We were concerned, but then in 2011, Glenda decided to rent out her house, as she was becoming afraid to live in the area, as there had been a lot of break ins and she had even been held up in her own home at knife point. She asked us if she could move in with Jean.
This proved to be good for Jean, because it was company, and Glenda could keep a check on the taps and stove plates. But, a year later, we returned to SA, because CJ’s sons had phoned to say that in spite of the company, the house was being wrecked, as CJ’s mom’s eyesight was failing, and she was unable to do much for herself anymore. Glenda sadly was not helpful in this regard. So, it was then that Glenda had to move out. She didn’t have a home anymore, as she had decided to sell and had lost the proceeds in a bad investment. Bonny did not want her disrupting her family life again, but fortunately, she found herself a flatlet, and for a while all was well. Bonny was working during this time.
Declan was growing like a weed, and Duane was gainfully employed by one of the car dealerships, doing services and repairs. For a few years, things were looking up, but then Glenda found herself without a home again, as her landlord had decided to sell the property. Again, she turned to Bonny for help, who reluctantly agreed for her to move back in with her. Immediately, the stress levels in the house skyrocketed as Glenda and Duane bumped heads, and the once peaceful household was again at war.
Bonny was in the middle once more, as the battles continued, but eventually, in 2019, Glenda moved into a retirement village, and peace descended once again. It was during this period that Bonny started feeling unwell with nausea and vomiting. Thinking initially that it was stress related due to all the emotional strain caused by the fighting and unrest, she ignored it, believing it would settle down after a while. But instead of settling down, Bonny started to feel worse and quickly too. She could keep nothing down, even water, and could only eat tiny amounts at a time.
This continued for months, and Bonny was at her wits end. She was out of work at this stage, because her previous position had her working extremely long hours, from before 7 in the morning, until sometimes after 7 at night, and she wasn’t able to spend any time with her son, because at weekends she’d be so exhausted, that all she wanted to do was rest. It was during this time, in the March of 2021, after Covid had locked us all away, that Bonny’s mom, the troubled Glenda, took her own life.
I had got a call on the Friday evening from a woman in PE, who said that a friend of hers in Cape Town, who was a friend of Glenda said that Glenda had phoned her the evening before to say that she had taken all her pills, and that she was phoning to say goodbye. Glenda had tried to phone me too, but I had somehow missed the call. This woman had gone onto Glenda’s Facebook page and looked for someone with the same surname as Glenda and had found me. So, I immediately called Bonny and they went over to the retirement village, which was just up the road. They battled to get in because Glenda had the gate code on her phone, and no-one was answering when they called. Eventually, they managed to attract someone’s attention, who let them in. They had to break in through the window and found that Glenda was deceased. It was a tragic end to her troubled life.
Having to deal with this and moving her mother’s things from her room in the retirement village, plus all the other things she had to do, just added to her woes, and she was constantly exhausted.
Then Bonny felt a pain in her left forearm, and thought that with all the moving of her mother's furniture, she had pulled a muscle. Tingling and burning sensations started in her left hand, followed by a numbness and sudden deafness in her left ear. Not long after that she began to feel shaky, like her muscles were fighting to hold her up. She put it down to the fact that she wasn’t eating, and it was the lack of food that was causing this feeling of weakness. She also had started shedding weight at an alarming rate.
She had been tipping the scales at 100kg. Then, she found that she could only walk for a bit before her legs would give way underneath her, and she’d collapse in a heap. Her arms became too weak for her to push herself up, and if no one was nearby, she’d have to wait until either her husband (who was now working from home) or her son could help her up. She suspected that this was MS. She decided to go and see a private doctor, who prescribed anti-nausea and anti-reflux meds and who made arrangements for Bonny to go to SOPD at Livingstone.
The Livingstone doctor sent her for a gastroscopy which could only be done 4 months later. They found that the pipe from her stomach to the her colon was slightly inflamed, but not to the point that it would cause such a reaction. A nerve conduction test was also performed by another neurologist, who actually had no clue how to use the machine that performs the test. He spent an hour on the phone getting instructions and then connected the wrong hand. He told her there was nothing wrong and that it was all in her head. When she told him that it was the left side that was dead, he said that it was only necessary for one side to be done.
The nausea and reflux continued, in spite of the pills, in fact they only seemed to worsen her tummy issues. By this time she had progressed quickly from walking with a stick, to needing a wheelchair, which was kindly donating by her husband's brother. The doctors seemed to be more concerned with her tummy than her continuing weakness, but eventually after months of to-ing and fro-ing, they admitted her to Provincial, where she underwent numerous tests including ultra sounds and a lumber puncture, she also had a colonoscopy which revealed nothing out of the ordinary.
When the lumber puncture results came back, it was discovered that her spinal fluid proteins were too high, which then brought them to the devastating diagnosis of CIDP, or Chronic inflammatory demyelinating polyneuropathy, which is a rare autoimmune disease. The Neurologist told her that they were not equipped to deal with this and she must just go home to die. Then on the 24th September 2022, to her dismay. Bonny started feeling muscle spasms in her chest and both arms. Her husband took her to Livingstone, where she started vomiting and sweating. An ECG revealed that Bonny was having a myocardial infarction. She spent a weekend in hospital, and returned home.
Chronic inflammatory demyelinating polyneuropathy is a rare neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. But not only does it affect the arms and legs, it affects the eyes, ears, and the other muscles of the body too as the myelin, which is the protective coating around normal healthy nerves, are being destroyed in the case of people suffering with CIDP. The sick nerves cannot function properly and send wrong signals, which, as it progresses, causes weakness throughout the body. Bonny finds her voice is affected, it is hard to project and sounds muffled or strangled, with little gasps in between words as she tries to speak. She struggles to cough and clear her throat too.
She can't laugh anymore. Her vision has become jumpy and blurry and she finds it impossible to read, or watch tv, or do anything that involved focusing her eyes. It also causes her to feel dizzy and unbalanced. Guillain Barre Syndrome is a very close relative to CIDP. CIDP is such a rare condition, that the neurologists in our government hospitals are not equipped to deal with it. In fact, there are some private neurologists who in all their years of practice have not come across this illness. Between 5-7 people per 100 000 will suffer from CIDP, and depending on the severity, and whether it is caught in time, depends on whether the treatment that is available, will be effective.
The Government hospitals in South Africa do not treat this disease. The neurologist told Bonny that he was very sorry, but she must just go home to die. This was in August 2022. In Bonny’s case, the symptoms just raced along, galloping through her body, and devastating her nerves, that by the end of August, she was unable to walk at all, and was confined to a wheelchair. Her initial symptoms are not necessarily everyone’s symptoms, and it is possible that it had nothing to do with the disease at all. But it certainly acted as a red herring, drawing attention away from the other symptoms, and causing delay in the final diagnosis.
But not only that. The whole state health system is inept. The doctors can be dismissive and arrogant. A case in point being the neurologist who did the nerve conduction test. I know that there are also some wonderful, caring and humble doctors in the system too, but even so, the wheels turn too slowly, those that need urgent attention have to wait in line, until it is sometimes too late. Having to wait months in between tests has also possibly pushed Bonny into the “too far advanced for effective treatment” category, and this is unthinkable. We cannot contemplate this. But, there is some light at the end of this very dark tunnel. If you remember, I wrote about a certain Dr Jacques Theron, a bike fanatic and physician in PE.
Bonny's good friend Lynda Alcock was able to contact him the other day regarding Bonny's case. HeHe left the GP practice at doctors @339 in February 2020 to focus on his work as sedation specialist. He is also co-owner of drip IV Lounge in Main Road, Walmer. He has a special interest in Ketamine treatment for resistant depression and pain management. He responded immediately to her call and has visited Bonny in her home, as she is now bedridden and is in adult diapers.
He suggested that they try NAD Plus infusion, which will lead the way into the immunoglobulin infusion, which is also known as IVIG, and which seems to be the standard treatment for this disease. Bonny is also receiving small doses of Ketamine to improve her mood, as she has also been dealing with depression, anxiety and suicidal thoughts. Ketamine is a horse tranquiliser but used in small doses, is effective in treating anxiety and depression.
Bonny has had a mixed response to the current regime of drugs, some days feeling strong and able to speak normally, and then the following day she is weak again.
This apparently is the way it goes, but we at least have hope. But now, the cost of the drugs is immense, and Bonny being unemployed, and her husband virtually unemployed as business is really bad, cannot afford to pay for this treatment. Dr Theron has been incredibly kind and has covered the cost of the first infusions, but he cannot carry Bonny for much more than this. He has advised that the cost of Bonny’s treatment will possibly start at around R100 000. So, we have approached Backabuddy SA, which is an online crowdfunding platform, where people can go to champion a cause, whether it be for a charity of their choosing, or an individual such as Bonny, and we have had an opportunity to tell Bonny’s story, and to ask for donations from friends, relatives and the wider population, so that Bonny can get the treatment she so desperately needs.
We have made the total amount a conservative R50 000, but according to Doc Theron, it will be more, at least R100 000. So, we may have to amend that at some point. Currently, as of yesterday, we have R3 047, which has been donated since Thursday.
Dr Theron has already appeared on Luister FM to raise awareness, and I had the opportunity to speak about Bonny on Luister FM on Goodwill Day. We are also approaching the other radio stations to speak on air with Bonny and myself and hopefully also Doc Theron, to raise awareness not just about Bonny, but also about this disease, and how little is known about it, and that there is no cure, only medication to ease the symptoms and to give sufferers back some quality of life.
Bonny has also applied for a disability grant from SASSA in October 2022, but it can take months and in some cases even years, before it starts paying out.
So, if anyone is feeling led to donate towards Bonny’s Backabuddy campaign, the website address is: www.backabuddy.co.za. Click on Home, then in the Search Block, type in Bonnita Gouws, and it will come up as Bonny Gouws Fight Against CIDP, and you will see where and how to donate. Backabuddy do take a platform fee, which comes off the monthly total donated, unless the donor agrees to cover the cost, which I think, is 8.05%
Bonny is so grateful for this opportunity to share her story, and finally feels that she has some hope. There is nothing worse than having no hope. It has actually been so amazing how God has suddenly opened doors so that we can get this story out there to the public. We are so grateful to Jesus for His grace and faithfulness.
This article was written for Team Talk by Pam Barnett, Bonny Gouws’ aunt.
We would like to ask our readers to make a difference in the life of Bonny Gouws.
Our prayers are with the Barnett family and Bonnie. Bonny, don’t give up. Nothing is impossible for God.
Stella Ashworth for Team Talk.
