Q&A with Dr Noemi Roy on Successfully Navigating Covid-19, 22nd May 2020
Updated: May 27, 2020
Shielding refers to the act of staying away from contact with other people in order to protect people who are deemed “highly vulnerable” for getting serious complications from COVID-19 infection. This includes people with sickle cell disease, because their spleen does not work and some of their organs are already not working at 100% due to the long-term damage from the sickle cell disease.
Not all patients with sickle cell disease have been shielding, out of choice. We have been advising that if it would help your mental health to go out for walks, then that is important too, and you should try to get out for some fresh air, preferably when no one is around and you can go walking somewhere that you will stay away from other people.
Everyone’s reaction to shielding has been different. Some people have loved having all this time at home, finding it a good time to do some reflection or spending time resting or catching up with a lot of other things in their life. Other people have found it extremely stressful, anxiety-producing and upsetting.
There is no right or wrong answer. We are all doing our best, and we must be patient and forgiving with ourselves.
Are those who have sickle cell trait considered vulnerable and susceptible to contracting the Coronavirus?
No, having sickle cell trait does not increase the risk of catching COVID-19 and does not make COVID-19 infection more serious or complicated.
If I have HbSC and rarely have any crisis, should I still be shielding?
Yes, for the moment all types of sickle cell whether mild or severe is thought to put you at risk or more severe COVID-19 infection and/or getting more serious complications as a result. This advice may change as lockdown eases.
Can Coronavirus trigger a crisis?
Yes absolutely. If you get symptoms of a crisis, manage it like you would at home, but keep an eye on any other symptoms. We recommend that anyone with sickle cell disease who develops a fever should contact their usual medical team to ask for advice. NHS advice on symptoms of COVID-19 include:
new, continuous cough
loss or change to your sense of smell or taste
We are approaching the end of the 12 weeks of shielding that was recommended? What will the next steps be from June 15?
Shielding has actually now been extended to June 30th. Further advice will be issued closer to the time. It is likely that the advice will be for individual risk-assessment that can be undertaken with your medical team.
Everyone needs to remember that the best way to avoid catching COVID-19 is to remain all by yourself locked in your room and never going out. This is obviously not practical long term! By definition, the more you go out, the greater risk you will take. But it’s about trying to manage that risk- balancing the risk with the benefits of going out, getting back to work, having a life. If the risk can be reduced to the lowest level possible, then you can decide what you can and should be doing.
This link should give you up-to-date information from the National Haemoglobinopathy Panel (a group of doctors and nurses who look after patients with sickle cell disease all around England):
Now that the kids are at home, what can you do to manage them well? My own is so restless and stays up well into the night.
This a struggle for everyone, and little ones as well. They pick up on our anxieties, and they feel that we are in a strange time and place right now. The best advice is:
(1) Try to have a good routine. Same wake-up time every day, same bedtime.
(2) Try to find ways for them to use up energy. If you don’t have a garden to let them run around, take them out to the park. If you can’t do that in a way that’s safe to stay away from other people, can you do something inside the house? Jumping jacks, a pillow fight, or maybe even just lots of tickling can exhaust them!
(3) Think about screen time. Are they spending too much time in front of the TV, phone or iPad? Is there a way to keep them occupied without a screen for more of the day? Certainly try to have no screens at all for the 2h before bedtime.
(4) Food- try to keep away from sweets which can fill them up on high energy. If they will have sweets, better to have it after lunch than after dinner.
(5) Try to have a nice wind-down evening. If they are meant to go to bed at 8pm for example, no screens from 6-8pm, plan some quiet activities like story time. Put some nice relaxing music (Classic FM is worth a try or just type ‘relaxing music’ into YouTube). Even very young children can try mindfulness, and because they will copy you, if they see you going through a wind-down routine every evening, they will start to join you. One idea is headspace:
There are some specific ones for children:
Have a go! It may not work first time, but after a week will probably start to make a difference. Also don’t forget you are not alone in dealing with this. Parents up and down the country will be in the same frustrating situation. It’s not your fault!
The WHO has defined more symptoms compared to what the NHS is advising. Specifically, ‘body pains’ was added as a symptom for COVID-19. Considering that sickle cell patients experience body pains, could someone who is having body pains and headaches only actually be suffering from COVID-19 -19?
Yes, it’s possible that if you have only a headache and body pains you could be suffering from COVID-19 and not “just” a sickle crisis. But if that’s all the symptoms you get from it and you recover fully, then you don’t need any additional treatment.
A close family member tested positive from COVID-19 and I wonder if I have actually had it myself as I experienced some mild symptoms. How soon will the antibody test be available so I can know whether or not I can resume my normal activities?
Plenty of people with sickle cell disease will have COVID-19 and have few or no symptoms and will not need any treatment but recover fully. We don’t yet know when the antibody test will be available for patients, and we also don’t know whether if you have antibodies it means you can’t get COVID-19 a second time.
If someone has a nasal drip, should they be tested for coronavirus?
At the moment, that symptom alone is not enough to lead to a test for COVID-19.
Does the coronavirus affect liver & kidneys as well?
Yes, COVID-19 infection can lead to liver, and mostly kidney, disease in everyone, whether or not they have sickle cell disease. This would happen when patients are in hospital, however. If someone is not ill enough to go to hospital, it is highly unlikely that they would get liver or kidney damage from COVID-19.
Is it possible the coronavirus could have been around before December 2019?
It is unlikely that anyone who had COVID-19 like symptoms in the UK before December 2019 was in fact having COVID-19. It is more likely they were having another type of virus, including influenza (‘flu).
BACK TO WORK/SCHOOL
I have HbSC and with school starting back on 1st of June, isn't it risky for me to send my kids back to school? Will I be putting myself at risk?
This is the question on everyone’s lips. It’s a little hard for me to give detailed guidance on this at the moment, because new guidance will come from the National Haemoglobinopathy Panel in the next 2 weeks or so. However, it is likely that we will be advising that it is safe for you to send you children to school, unless you have discussed this with your medical team and they have advised you against this in your case.
Having said that, please remember everyone must do what they feel comfortable with, what they feel is safe for them and their family. As far as I know, parents could choose to keep their children at home and wait a little bit to see what is happening before deciding to send their own children to school. Obviously you would need to keep teaching your child with online homeschool as you have done during the lockdown. If you need help speaking to your child’s school, please ask your medical team. They will be happy to help you discuss the issue with the school.
How do you manage a child with sickle cell if you want to go back to work and you work in the care sector?
Again, we will be able to give some more detailed advice in a couple of weeks, but it is likely that we will say it is safe for children with sickle cell disease to go back to school. Having said that, if you work in the care sector I can see that you would be worried about bringing COVID-19 infection home. Very reassuringly, our data from children with sickle cell disease all over the UK who have been infected with COVID-19, we are pleased to see that children with sickle cell disease are not at increased risk of serious complications. Children with sickle cell disease who get COVID-19 seem to do very well and recover completely.
DIET AND SUPPLEMENTS
For people with below normal levels of vitamin D level, what is the prognosis if they catch COVID-19?
We don’t have any information on the role of Vitamin D in protecting patients with sickle cell disease from severe COVID-19 infection. This data will be available with time. However, it looks like from the general population that Vitamin D levels are important in fighting off COVID-19, and we know that many people with sickle cell disease are low in Vitamin D levels. So our advice is to take your Vitamin D supplements. If you are not prescribed these at the moment, please get some over-the-counter.
Does the intake of vitamin C tablets and Vitamin B12 injections?
We do not have any information about this. No one should be taking Vitamin B12 injections unless their blood tests show low B12 levels. Vitamin C probably doesn’t hurt!
Are there any other vitamins or supplements I should be taking?
Not that we know of. We just recommend plenty of water, a good routine with plenty of sleep, and some healthy eating.
What happens if I receive a blood transfusion from someone who tests positive for COVID-19?
NHSBT (NHS Blood and Transplant) are very careful to wait several days between someone giving blood and their unit being available for use for a patient. This gives the donor time to call NHSBT and say if they have developed a fever after donating blood. In that case, the unit of blood will be discarded.
There have been no instances of anyone catching COVID-19 from blood transfusions. SABTO (Advisory Committee on the Safety of Blood, Tissues and Organs) makes decisions about what needs testing in blood units, and they have not suggested testing for COVID-19 as there is currently nothing to suggest this is necessary.
The other thing people wonder is whether a blood transfusion from someone who has definitely had COVID-19 could actually protect them from infection. This idea is currently being tested in a clinical trial in the UK, but would need more doses than a single unit of blood (the antibodies first get concentrated and then infused into patients who are very sick from COVID-19).
Are exchange transfusions still safe in this pandemic?
Yes! Definitely. Please continue to attend your transfusions. If you have any concerns, please speak to your medical team.
If you have any further questions, please do send them to: