Advice for patients with Dyskeratosis Congenita (DC), telomere biology disorders and their relatives
Coronavirus COVID-19 is a new virus which can cause severe pneumonia and damage to other organs, although most people will have a milder illness. It is estimated that 97 to 98% of people contracting the coronavirus will recover, and the vast majority of these will not need hospital treatment. 2 to 3% of those known to have had coronavirus have died as a result of the illness, some of whom had pre-existing medical conditions. The risk is greater in those with Dyskeratosis Congenita lung problems or other medical conditions, such as blood/bone marrow, liver or gut problems than in those who have no medical problems. Healthy children, pregnant women and young people seem to be less badly affected.
Symptoms of the coronavirus infection include sudden onset fever, sore throat, dry cough, headache, muscle pains, loss of smell and sometimes shortness of breath. In most cases symptoms get better after a week, but in small numbers of people, symptoms get worse at around 7 days, with continued fever and worse shortness of breath.
The incubation period of the coronavirus is up to 2 weeks. That is, after contact with an infectious person, it may take up to 2 weeks before symptoms appear.
Minimising risk of virus infection
As with any virus infection, the coronavirus is likely to be spread by viral droplets, where people have coughed or on surfaces that infected people have touched.
In general, the chance of catching a virus infection can be minimised by:
- Avoiding crowded areas.
- Avoid touching eyes/nose or mouth when not in the home. We recommend facemasks and gloves if you go out.
- Washing hands where possible, especially when returning home, before you do anything else. If out of the house, where washing hands is not possible, alcohol hand wipes/washes can be used.
- Staying away from people who have potential symptoms of infection as much as possible. Where this is not possible, anyone with a cough/cold should use a tissue which should be disposed of immediately, washing their hands afterwards.
- Facemasks are controversial but even home-made ones are likely to provide some protection to you and to everyone else.
If you are unwell
- If you have chest symptoms, fever or are otherwise worried that you may have COVID, contact your GP or specialist centre for advice. Do not attend your GP or hospital unless requested to do so. If symptoms are very severe, you should dial 999. You should contact NHS 111 or dial 999 if symptoms deteriorate at any time, mentioning that you are medically ‘vulnerable’.
- If your GP or specialist feels that coronavirus is a possibility, they will give you advice depending on how unwell you are. The UK government is not yet recommending home testing for COVID unless you or a family member are an essential worker. But this advice is likely to change soon.
- You should also follow your usual treatment plan in the event of being unwell. This includes starting antibiotics if this is your usual treatment for infections (antibiotics will not help for COVID, but will be able to treat bacterial infections). Remember – you will still be at risk from all the usual infections and DC-related ailments and should take treatment for these if necessary.
- You will need to drink more fluids than usual if you have a fever – you should aim to ensure your urine is very pale.
- If you live alone, get a relative or friend to contact you frequently (once or twice daily) to check on your wellbeing.
- There are no proven treatments for COVID at present but there are several potential medications in clinical trials. We strongly recommend that you take part in a trial if this opportunity is offered.
Do you need to “shield”?
“Shielding” is recommended for everyone who has symptoms of Dyskeratosis Congenita (DC), such as low blood counts, lung, liver or bowel disease, or impaired immune system. Household members should also shield, so that they do not inadvertently bring COVID into the household and infect the person with DC. This is very important because many people, especially children, can have COVID with few or no symptoms.
If shielding, you and household members should not leave your home or private garden. Children should not be sent to school and household members should work entirely from home. You should get shopping online or delivered by friends/relatives. Ideally, the medically vulnerable person should have a separate bedroom and bathroom from the rest of the family.
“Strict social distancing” applies to all of us but is even more important for those who may be at slightly increased risk of severe COVID. This may include people who carry a DC gene, or close relatives of those with DC who have not had a genetic test.
If you are based in the UK and need to shield, you should already have received a letter from your doctor – if not, you should contact your doctor and your specialist to ask to be registered as being in need of shielding, or self register on the website below. This will make it easier for you to get the assistance and support you need while you stay at home. It will also make things easier for any household members who need to stay off work or work from home in order to protect you.
Register as requiring shielding here: https://www.gov.uk/coronavirus-extremely-vulnerable
Keep updated with governmental advice concerning the situation on: https://www.gov.uk/coronavirus
For more information:
If you are extremely unwell or have difficulty breathing contact NHS 111 (https://www.111.nhs.uk ) or ring 999.
If you or a household member is unwell and needs to stay at home:
Advice for those with low blood counts or bone marrow failure via the Aplastic Anaemia Trust:
Advice for those with pulmonary fibrosis or other DC-related lung diseases from Pulmonary Fibrosis Trust:
Advice for those with liver disease via the British Liver Trust: