Advice for people with deafblindness and their relatives in connection with coronavirus and covid-19

First and foremost, deafblindness is not one (1) disease, but often has many causes. These causes are called syndromes. Today, we know of many syndromes that can cause deafblindness. The word syndrome means that more than one organ in the body is not functioning perfectly, but has the same cause. In most cases, this is due to a gene that is unable to produce a certain protein. Deafblindness means that hearing and vision do not function perfectly, but many syndromes that lead to deafblindness mean that other organs in the body also have impaired function. This is because the genes' proteins are also needed in these organs.

Secondly, proximity to other people is a necessary condition for people with deafblindness. Body contact is required for communication and socialising, to access information and to be able to move. That's why the coronavirus (COVID-19) situation is particularly challenging for people with combined visual and hearing impairment/deafblindness.

Important to consider in connection with syndromes that cause deafblindness

Usher syndrome
In Usher syndrome, it is the eye and ear that do not function perfectly. No other organs are affected by the Usher genes. Nevertheless, people with Usher syndrome should be as careful as everyone else in society, but also take extra care when being accompanied, receiving help from others and when using tactile sign language.

CHARGE syndrome
This syndrome causes several organs to malfunction. A person with CHARGE is very susceptible to infections. They sometimes also have abnormalities in the heart, respiratory tract and other organs that can make a corona infection very serious. If you have CHARGE, you should stay at home and not meet other people more than necessary. Even the family around a person with CHARGE should have very limited contact with other people.

Alström syndrome
Many organs need the gene that does not work in Alström syndrome. This means that people with Alström should be extremely careful, stay at home until further notice and meet as few people as possible. People with Alström who catch a cold or other infection must contact the healthcare system immediately, as a corona infection can very quickly make a person with Alström very ill.

CAPOS syndrome
This syndrome causes damage to vision, hearing and nerve cells. In addition to deafblindness, it also causes muscle weakness and reduced muscle mass. Adults with CAPOS are sometimes dependent on using a wheelchair and need a lot of help. For now, people and families with CAPOS should stay at home as much as possible, be very careful and meet as few people as possible. It has been shown that CAPOS can be greatly exacerbated by high fever. In case of fever, a person with CAPOS should quickly take fever-reducing tablets and contact the healthcare system right away.

PHARC syndrome
The syndrome means that vision, hearing, brain and nerve cells are damaged. In addition to deafblindness, it also causes muscle weakness and reduced muscle mass. Adults with PHARC are sometimes dependent on using a wheelchair and need a lot of help. People and families with PHARC should stay at home, be very careful and meet as few people as possible.

Wolfram syndrome
In addition to varying degrees of deafblindness, the syndrome also leads to diabetes mellitus and diabetes inspidus, which causes kidney failure and excessive urination. For the time being, families with Wolfram syndrome should stay at home, be very careful and meet as few people as possible.

Riboflavin transport deficiency syndrome (RTD)
This syndrome means that nerve cells cannot absorb vitamin B2 (riboflavin). It causes deafblindness, but also damage to other nerve cells, which can be further damaged by a corona infection. For now, families with RTD should stay at home, be very careful and meet as few people as possible.

If you have deafblindness, you should also consider
Our distant senses are sight and hearing, and our near senses are taste, smell and touch. With deafblindness, you need to use your near senses much more than others. If you have trouble seeing, you may need to look up close. If you can't hear, the person speaking must sit close to you. If you use sign language, you may need to be a short distance away or use tactile sign language. This means that in many situations, you'll be very close to other people or have body contact.

Pay special attention to:

1. We receive a lot of information every day. Often the information is not adapted to people with visual and hearing impairments. Try to get help from friends, relatives and others who can provide you with up-to-date information through phone calls, text messages, emails - preferably every day.
2. If you have an interpreter, companion or personal assistant - make sure to limit the number of people helping you as far as possible. If you have a cold, you should not use an interpreter/companion. Instead, make sure that the services you need can be arranged without you joining them. Interpreters/escorts should wear gloves. Both you and your interpreter/escort or assistant must wash your hands carefully and often. This is especially important for those who use tactile sign language.
3. If you are worried and need someone to ask or talk to - get in touch with your contact person in the municipality, with the counsellor at Eikholt or the counsellor at the regional centre for deafblind people where you live.

More information
If you have deafblindness, whether you are older or younger, you may be in the risk group. Therefore, you need to pay close attention to the advice given by the Norwegian Institute of Public Health and the Norwegian Directorate of Health in relation to the elderly and others who belong to the risk group:

• As far as possible, avoid public gatherings, public transport, shops or public premises.
• stay at home, but of course there's nothing wrong with taking a walk and spending time outside in environments with few people.
• Ask for help with, for example, buying food and other things that may involve close contact with other people.
• Consult your doctor about measures to reduce the risk of being infected by the coronavirus.

We at Eikholt fully understand the difficulties you are experiencing in connection with the measures introduced to combat the spread of the corona virus and the inconvenience this causes for you who have special needs for close contact with other people. We will monitor developments and update the information on our website.

Text: Claes Möller, dr.med, professor em.

Translated into Norwegian by Roar Meland, Director of Eikholt National Resource Centre for Deafblindness