How people with rare illnesses and their families cope amidst Covid-19 and the national lockdown

While the Covid-19 crisis, and the ongoing national lockdown is taking a heavy toll on South Africans, there is an often overlooked, and significantly marginalised community for whom the lockdown may prove to be the difference between life and death.

This is the Rare community, made up of individuals who live with illnesses that are extremely unusual, for whom treatment is often hard to come by, and the families and caregivers that support them.

DispatchLIVE spoke with a few Rare Warriors, to find out how they feel Covid-19 might impact them, and how the lockdown has influenced their lives.

Kelly du Plessis is the CEO of Rare Diseases SA, an NPO that aims to empower rare patients through advocacy. She is also the mom of Juan, aged 10, who has a rare disease called pompe, which affects his entire muscular-skeletal system, particularly his diaphragm and pulmonary system.

Says du Plessis: “As a rare family, infection control is not a new concept. Neither is socially isolating ourselves during flu season. We are currently living with the reality that should Juan catch Corona, and is ventilated, he will likely never recover. As such, we have had to really be strict in terms of contact. If I need to leave home for necessary items, upon coming back, I ensure that I shower and discard of my clothing directly into the wash machine prior to coming into contact with anyone in our home. We are constantly monitoring temperatures and on the lookout for any signs and symptoms for quick action to be taken if needed. We also removed both Juan and his sister from school one week prior to schools being closed.

“To be honest, lockdown is a welcomed relief as it removes a lot of the responsibility I feel as a mother to protect my rare warrior and family from being infected. Whilst we are all feeling the economic pinch, I’m grateful that South Africans are staying home. It’s a still a major concern how we will approach re-integrating back into society when lockdown ends, but for now, our home is at peace knowing we are safe.”

Noting the pressure hospitals are expected to face as Covid-19 cases continue to mount, Du Plessis adds: “I must add that I’m exceptionally grateful that we made the transition to home infusions as it has removed the necessity for Juan to need to go into hospital to get his medicine. In times like these it’s a massive relief.”

Corne Roux, aged 33, lives with Ehlers-Danlos Syndrome, fibromyalgia, lupus and psoratic arthritis. She has undergone over 40 surgeries in the last few years. She says in response to feeling overwhelmed she decided to start a support group to help people who are facing the same struggles and who are in need of advice and support.

Says Roux, “Having these conditions and a compromised immune system, you always wake up feeling happy you woke up, and when you go to bed give thanks that you made it through the day with everything intact.”

Roux sees positives to the lockdown. “I have time to catch up on some reading, crosswords, colouring. I was becoming overwhelmed, so taking this time out for myself was needed.”

But, she adds, “This lockdown is bittersweet. Depends on your perception and circumstances.

“As a person with an invisible condition I do feel left out in this whole lockdown situation. Having invisible conditions or a disability makes it very hard when it comes to shopping when you need to go out. Provision for this should have been made. Having an invisible condition can be a gift or a curse. In lockdown it is definitely a curse, but I will get over this hurdle.

“I am very proud of our president and the choices he made. He made it to protect us. Earth is healing. All I can do now is to do what government asks, and hope we as a country can put our differences aside and work together.”

Alice Vogt lives with cystic fibrosis. She has had 2 bi-lateral lung transplants, in 2008 and 2017.

“I have been self isolating for about 2 weeks before the lockdown started, avoiding everyone who has been to the shops. Family members brought me groceries, and I took it from them while maintaining a distance. I then clean off all items with alcohol spray. I have been unable to see my transplant Dr (or any other Drs) for the last month or so. If there is an emergency I will be seen, but the idea is to avoid having to go to the hospital. So having a routine check-up is too risky. I was still running and walking in my neighbourhood before lockdown started, and I really miss that. It helped to keep me sane, especially in the absence of being able to do lung function tests. Running helps with anxiety relating to my lungs!

“I'm very happy about the lockdown from a medical point of view. Obviously I do wish walking outside in a park was allowed, but it's not the end of the world. My big fear is when the world will be safe for me again.

“After the lockdown corona will still be there, so it still won't be safe for me to resume a 'normal' life. I can work from home, but I'll still be very selective of seeing friends and family if they have gone back to work and could have been exposed to it. I worry about when I'll safely be able to see any of my Drs again. I worry for the health of my lung specialist, as he will deal with the sickest of the sick Corona patients. So lockdown will basically be a bit of an indefinite thing for me.”

Jonathan and Jean Ancer's daughter Rachel was diagnosed with a rare disease called Pure Red Cell Aplasia when she was five.

Jonathan tells the story. “Basically it meant her bone marrow had gone on strike and wasn't making red blood cells. She survived on red blood transfusions until she became transfusion dependent and her team of doctors at the Red Cross Children's Hospital, where she was being treated, said she needed a bone marrow transplant. She had one in March 2017.”

The Ancers decided to go into lockdown very early. “Although Rachel is now up to date with her vaccines and her blood levels are normal we decided we couldn't take any chances, but other than that we haven't had to take any extra measures.

“Rachel was in isolation for about three months — six weeks at Groote Schuur hospital's transplant unit and then six weeks at home — after her transplant, and so she knows all about lockdown and quarantine. She developed skills where she could disappear into her imagination. She was also very sick (she had endured chemo to obliterate her faulty bone marrow). We also learnt early on about the importance of hygiene because she had no immunity, and so we had to be very strict about de-germing ourselves whenever we came into contact with her.”

Former Mrs South Africa, and Survivor SA contestant Nicole Capper became a rare mom to a rare worrier when her second child, Tatum, was born and diagnosed at 6 weeks old with Cystic Fibrosis. CF is a rare life limiting disease that affects the lungs and pancreas, among other organs.

Says Capper, "It changed our lives completely because suddenly all the hopes and dreams that we had for our little girl were shifted and the future was suddenly very uncertain. I became passionate about Rare Diseases South Africa as a cause because it suddenly took me out of the Cystic Fibrosis bubble and placed me into a much larger family, where it was not about feeling sorry about yourself and your condition, but extending your perspective to think about others who have far worse conditions, with very little symptomatic treatment, no cures and often one of a handful of people in the country who have the same condition.

"Cystic Fibrosis was the catalyst for change in my life certainly and gave me purpose as a mom and as a woman to be in an example to my children and others, to have somebody who doesn't accept a life of fear and empathy but who goes out and champions bravery from the smallest decisions, like not caring what people might think, to larger decisions like taking on mountain climbs and adventures for a purpose or entering something like Mrs South Africa or Survivor South Africa and pushing myself outside of my comfort zone."

The Covid-19 coronavirus "has been an extension of our existing way of life, and for us it has not been a massive shift in mind-set, certainly. It has affected how we live because we locked down our household for a few weeks prior to the official government lockdown to cocoon and protect Tatum from potential Covid-19 infection, because for her it could be a worse prognosis as she is part of an at-risk population due to lung disease.

"For her, a coronavirus infection could potentially affect her life span and cost her years because of inflammation and damage to her lung tissue. However, her disease is already part of our day to day life and considerations from what activities we do to what we deliberately and unknowingly expose her to in the form of pathogens as well as pollution and toxins in the environment."

Capper has a straightforward perspective on the impact of the national lockdown. "For us it has been just a level up in our current way of life and thinking. It's been a bit of an awareness for us that other people need the support that we had when we first started this journey. As part of the rare family, we've always had the support of Rare Diseases South Africa in making us feel like we are normal, like we still have hope and like there's other people around us that know how we feel and give us advice. We have now deliberately extended the same to our community, how can we encourage and teach deliberately what we do instinctively. So we have been reaching out on platforms such as The Impact Hub, where we have the conversations to make people feel like the world is not ending and, in fact, if we support one another we might get through this crisis a little bit stronger than we were before."

Claire Woollatt's firstborn and youngest sons both live with rare conditions. Daniel, 12, has Generalised Pustular Psoriasis and Psoriatic Arthritis, and uses immune suppressants. Woollatt says she and her husband pulled him out of school early due to the coronavirus. Daniel struggles with anxiety knowing that he is in a vulnerable group.

“I'm not sure when we will feel comfortable enough to send him back to school after the lockdown eases,” says Woollatt.

Jason, aged 6, has Benign Hypermobility Syndrome and low bone density. Says Woollatt, “We can luckily administer meds from home for both boys, and the meds get delivered. But physio and occupational therapy, which both boys need, has had to be postponed to save funds and because it's not safe for exposure.

“It's like the rest of the world are experiencing for the first time what we have been experiencing for years. Neither my husband or I are able to earn during lockdown, so the costs of medical aid etc are a huge concern.”

Rina Wirths's daughter, Lynnmari, aged 11, lives with Ehlers Danlos Syndrome and Gastroparesis. Wirths says that “Lynnmari has always had breathing issues and her lung capacity is not as it is supposed to be so I became more over protective with her as I know if she should get it her chances would be very slim as her oxygen and lungs is really not good at all.

“Lynnmari stays inside all day and it's not that I don't want her outside, it's because even with season changes she gets ill.”

Wirths does, though, see a positive side to the effects of the Covid-19 lockdown. She says there is now “more time with my kids and hubby. Lynnmari is really doing great as we now have more time to focus on her challenges — from emotional breakdowns, to depression etc.

“I am taking this opportunity with both hands to get a taste of her world with school work, to her struggling to ace a mathematical issue etc. We selected one person in our house to always run all errands, which is hubby because he is also an essential worker, which is scary but he makes sure to not get in contact with us  when he arrives home. He goes straight to the shower and washes his clothes.

“This is probably the hardest as I can't be so care free anymore, just run to hug him, or kiss him. It takes an emotional toll as we are worried, and when he arrives home all we want to do is kiss and hug him, but this too shall pass.

“I am stressed as financially its a huge strain as my online business is also on lockdown. But I would rather build that up again than learn to live without my kids or husband.

“It's a hard time for the whole world, but we need to encourage one another and not let this get us down. We can only focus on beating Covid 19 at this stage, and then when we have beaten this we can focus on rebuilding our lives with all the people we love and coming together as a nation.”

Lauren Kennedy's son, Tristan has a rare lung disease called Obstructive Bronchiolitis Obliterans. In February he was also diagnosed with a Primary Immune Deficiency.

Says Kennedy, "I go into a panic about the slightest cold anyone in the family gets as it usually means hospitalisation for Tristy. Due to his disease he has regressed emotionally, so not going out at this stage is actually a blessing for him. I am petrified of coronavirus for him. As it attacks the lung he is extremely vulnerable.

"For Trist the lockdown is fabulous. This is usually the time of the year he gets quite bad with lung issues, and staying away from others has definitely been a bonus for him. For us, not getting out to cope with his disease and the stresses it brings, (I am a triathlete and run, swim and bike regularly to destress and cope), has not been easy. I generally am on high alert all the time for my small family, but now this has been exacerbated. I am constantly assessing how he is breathing (which I think he hates) and am on high alert for any cough, fever, sneeze, etc. However, mentally, the lockdown for all of us has been a huge strain."

Ashleigh Paterson lives with Ehlers-Danlos Syndrome, as well as gastroparesis and severe Autonomic dysfunction. She is currently in hospital in KwaZulu-Natal, and shares her experience as a Rare Warrior in hospital during the ongoing Covid-19 epidemic.

Paterson describes how Covid-19 is impacting the hospital staff. “Nurses are afraid of giving it (Covid-19) to their children, and of catching it themselves. Public transport is more difficult because the cost has gone up. Doctors and nurses constantly changing shifts can affect patients' care if their opinions are different. Everyone is certainly more tense. The wards are constantly moved around, which is unsettling for us as patients, and the doctors and nurses are definitely more irritable. The pharmacy isn't stocking normal medication.”

She adds that “families and friends are not allowed to visit at all, so it gets very lonely. Even dropping clothes off that are clean is a challenge.

Paterson notes that at times there is “a struggle to get school children looked after for the nurses. Wards have been closed strictly for corona patients, and others for nurses to sleep in that can’t afford to go home. What was once a thriving hospital with a coffee shop that people in the area came to and a pharmacy with a great gift shop, these are both closed.

“As an immune compromised person I’m scared of all the moving, and catching further bugs. And on the odd trip downstairs it’s like a ghost town. I have great respect for those health care workers still coming in and working.”

Kirsten Heuer's son Declan, aged 4, has a rare autoinflamitory disease called Mucklewells syndrome.

Describing the impact of Covid-19 on their family, Heuer says, “We are staying home and taking extra precautions when going to the shops. Declan has not left the house in almost a month. Declan has a daily injection which compromises his immune system. So lots of vitamins are taken daily too.

Heuer thinks the lockdown “was a great idea”, though she does also add that it is  “daunting for work and school (we have a 9-year-old too). We have no idea how Declan's body will react to the virus. It's our main concern. Honestly this entire lockdown and virus is very overwhelming, even more so with a rare family member.”

Toni Wagenaar's son, Keagan, lives with Friedreich's Ataxia. Wagenaar says because Keagan uses his wheelchair all of the time lockdown “hasn't really made a difference for him as he is mostly home bound”.

She says they are “taking precautions now more than ever. I think the lockdown was necessary, but will be devastating to us and to the community financially”.

Nerissa Roberts' son Ezra has Haemophilia A. Roberts says, “We have stocked up on the medication he receives intravenously 3 times a week, but we're a bit worried about the next delivery. We're not sure when production of his medication will become a problem. On Friday it's world haemophilia day, and we're a bit sad that our awareness activities had to be cancelled. But we're very lucky that we can self-administer his medication, so at least he's safe at home.”

Denique Moneron was diagnosed with relapsing remittent multiple sclerosis in June 2018. However, she says she believes that she first started showing symptoms of the disease in January 2014 while in the middle of a traumatic event.

“Before the lock down came into effect, when our president first announced that schools would be closed and we all had to start practicing social distancing, I got incredibly nervous. The measures I took at work to protect myself just opened me up to ridicule and harassment from fellow employees and my immediate supervisor. Nobody saw the panic I was facing. They just thought of me as entitled and dramatic. (Everyone I work with knows about my diagnosis.) When we received the instruction to go into lock down I was relieved and grateful, because I had reached a point where I wasn't concentrating at work, people were still whispering about me, my supervisor and the other managers were not understanding and HR was doing nothing to help. I am currently working from home.

“Even though the cabin fever gets a bit much at times, I am just grateful I can continue working from the safety of my home. I am also incredibly happy with the action our government has taken to protect us.”

Jayd Dell has a rare disease called Friedreichs Ataxia. She uses a wheelchair full time, and suffers from major depression and anxiety. She says he started to follow a strict isolation 2 weeks before the official lockdown. As she is a freelance digital marketer she has lost most of her clients as a result of the lockdown.

Her boyfriend, Shaun, also has a rare disease called Churg-Strauss Syndrome – a disease characterised by inflammation of the blood vessels. Last week Shaun was admitted to hospital for a bad flare up (his blood vessels inflame, so blood battles to go to vital organs, his breathing/lungs are affected most).

“I am trying so hard to keep it together. But I'm just hanging ...”

Natasha Turner is mom to Jasper West. He has nephrogenic diabetes insipidus (NDI), a rare kidney disorder.

Turner says all of his medication was stopped at the end of last year as they had started to have a negative effect. “He has already had a massive seizure that lasted 40 minutes and suspected small ones last year. Hence the stopping of medication, says Turner. “He is 4 years old now and a very outgoing child. He misses school and his friends terribly. My fear is that the flu season is upon us and he is very susceptible to chest infections and bronchitis since birth. Doctors suspect he might have asthma as his IgE levels are extremely high. We are just trying to keep him healthy in the best way possible right now. As soon as I see a snotty nose I start giving him sinuclear for a few days until it clears, so it does not end up in the chest.”

Turner is also mom to Elena West. “She has 4th nerve palsy, but the rare form that does not correct itself, and she was born with it. She went for her third eye op on 23 March. That night they announced the lockdown. In a way she is lucky as it has given her extra time to recover, and the doctor said it will work in her favour with the healing process.

“She is 9 years old. She had a chest infection after the op but it is all cleared now.”

Caitlin Trollip's 8-year-old son Jaden has a severe heart defect called Tsicuspid atresia and hyper plastic right heart syndrome. He also has a pacemaker. "He had many heart ops, the first being at weeks old."

Says Trollip, "The hardest part is telling him he can't go out, not even the shops. He is getting frustrated. He has a mask and apart from his chronic medication I give him a zinc based multi vitamin daily."

Reflecting on the impact of the national lockdown, Trollip says she feels "scared, not knowing what the future holds. Absolutely paranoid about my son's health. Praise God he's doing well so far."

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