How to use the speech recognition tool?
Patients with rare eye diseases and visual impairment or blindness may have extra difficulties taking normal protective measures (washing hands frequently, social distancing, respiratory hygiene practice, …). Psychological and social situations may be worsened because of lockdown.
National and international patient’s groups and associations may be of great help in giving recommendations. In addition most national recommendations given by the health authorities take into account various handicaps and provide specific pages to inform patients.
Should any problems occur for patients in a given country member of ERN-EYE, a telephone number is provided at the end of the website for each hospital.
It is recommended to switch to glasses thus avoiding manipulation of the lenses and in addition wearing glasses protects from droplets.
In most countries regular and routine follow-up or non urgent consultations are postponed in order to respect social distancing. Only conditions that require very close follow-up (tumors, evolving sight threatening lesions like new vessels on the retina, …) or emergency situations (sudden loss of vision, acute pain,…) are taken care of directly in the hospital department. An emergency telephone number or email is accessible in all our HPCs see the list.
Some Hospitals offer teleconsultations meaning that you can book a telephone appointment and have a consultation concerning for instance your treatment (with the limitation of not having a proper eye examination); genetic testing result interpretation; genetic counselling; …).
1° I need to check if the appointment is maintained, postponed or done by teleconsultation. For this I email, or I telephone to the department.
2° If I have to go to the hospital then I respect strictly the protection recommendations. In the waiting room I respect the distance between me and other persons.
This depends on the national regimen but it seems that in most countries this is not a problem BUT the rules have to be strictly followed again for precautions with masks, social distancing, regular washing of the hands, etc…
The current spread of COVID-19 is a result of human to human transmission. To date, there is no evidence that companion animals have spread the disease. Therefore, there is no justification in taking measures against companion animals which may compromise their welfare. However, it is forbidden to cuddle the animal as he can be a vector of the virus (especially with small asymptomatic children).
Most genetic laboratories have routine activities stopped to enhance the fight against COVID noticeably via testing resources. National platforms (such as in France or in the UK) are shutdown. This does not mean that your sample is forgotten, there will be an extra delay in the access to the result. Urgent genetic testing for pregnancies are maintained in most countries in case of prenatal diagnosis.
Unless there is a vital or major condition to be monitored in a patient were the study has started, the follow-up visits are postponed. Any major or minor side effect should be immediately reported by telephone or mail to the investigator who will advise on what to do. Should you have any questions then you can email or contact the investigator in your center.
New inclusions/recruitments in studies are postponed.
Please see the EMA guidance:
There are no direct COVID-19 effects observed to date on eyes except for the contamination that can occur through the conjunctiva as for the flu making it necessary to protect the eyes especially for healthcare professionals. No consequences due to COVID-19 infection have been described on current eye conditions.
Concerning anti COVID-19 therapies there may be side effects on the eye. A major question around hydroxychloroquine/ Chloroquine is currently being debated about possible toxicity to the retina. For short course treatment under clinical supervision there should be limited risk even though the patient has retinitis pigmentosa or another inherited retinal dystrophy ( see ERN-EYE member statement). Strict medical prescription and follow up are indicated (exclude specific eye or other condition that would enhance the toxicity and side-effects risks).
International COVID-19 information WHO:
For Europe: European Center of Disease Prevention and Control CDPC:
For the US: COVID-19 Information Center of Disease Control and Prevention CDC:
For COVID-19 information in your country see website of your national Health Authority.
Answer: Indeed, corticosteroids increase the risk of infection, and the barrier measures must be respected; they include the careful and repeated washing of hands, the distance between people of more than one and a half meters and the drastic limitation of human frequentation. The best way to limit the spread of COVID -19 is to stay at home.
Stopping corticosteroids exposes an inflammatory rebound, therefore a recurrence of uveitis, which can threaten vision if the uveitis is severe. In these conditions of threat to visual acuity, and especially if the recurrence of uveitis involves both eyes, the dose of corticosteroid therapy must be increased, which increases the risk of infection. This can be dangerous while we are in the viral epidemic.
It is better not to increase the risk of recurrent uveitis now, so it is better not to stop corticosteroids. You can contact your ophthalmologist, internist or general physician, who can assess with you the best benefit / risk ratio for you. They can adjust the doses to reduce the risk of infection, without exposing you to a rebound of uveitis.
If you have signs of infection, call your doctor or the national emergency medical number.
These treatments were introduced to reduce the daily dose of corticosteroids, in order to have the lowest possible daily dose of corticosteroids while still controlling eye inflammation. These treatments were introduced due to (1) an excessive daily dose of corticosteroids (2) severe uveitis (3) of a specific cause of uveitis such as Behcet's disease (4) extraocular signs which require these treatments.
Do not stop them, so as not to be exposed to an inflammatory rebound. Indeed, a recurrence of uveitis would require an increase in corticosteroids and immunosuppressants, which, in large doses, increases the risk of infection. This can be dangerous while we are in the viral epidemic.
However, these drugs are immunosuppressive, they can decrease the immune system's response to an infectious agent. The barriers displayed by all media must be fully respected. They include careful and repeated hand washing, social distance between people of at least one and a half meters and drastic restrictions on public gatherings. The best way to limit the spread of COVID-19 is to stay at home.
In case of recurrent uveitis, especially if the uveitis affects only one eye and not on both sides, and if the recurrent uveitis threatens the vision, a local injectable corticosteroid may be considered. Talk to your eye doctor who knows about the benefits and side effects and is able to do this if necessary.
A special note may be made on the main immunomodulatory drugs used for the treatment of uveitis, polyvalent immunoglobulins and interferon alpha and beta. These immunomodulatory drugs do not increase the risk of infection and tumor. Thus, during the period of viral endemic, these immunomodulatory drugs can be taken, keeping the same doses that have been effective in controlling uveitis. In cases of recurrent bilateral macular edema, these drugs may be used earlier in the conventional therapeutic algorithm. They can avoid an increase in the dose of corticosteroids. Interferon alpha and beta have been shown to be very effective in macular edema prospectively.
In addition, interferon has some antiviral activity and therefore does not increase the risk of infection at all. It is one of the drugs tested for infection by COVID-19 treatments, in international protocols such as the on-going DISCOVERY protocol.
Another special note can be made about anti-interleukin 6 treatment, such as tocilizumab Actemra® which can be used in the treatment of uveitis. For COVID-19 infection, this treatment is currently being studied in international protocols at the stage of the disease called "cytokine storm". Indeed, excessive release of cytokines may be one of the factors leading to the death of COVID-19 infection.
For other immunosuppressive treatments, you can contact your ophthalmologist, internist or general physician, who can assess with you the best benefit / risk ratio for you. They can adjust the doses to reduce the risk of infection, without exposing you to a rebound of uveitis.
If you have signs of infection, call your doctor or the national emergency medical number.
Usher syndrome associates deafness and visual impairment, and there are specific recommendations especially in practicing sign language, close sign language, tactile language and finger alphabet.
We recommend the following guidelines form Usher Austria:
The Austrian patient group for usher syndrome has provided the following Precautions and guidelines for people living with vision and/or hearing loss due to Usher Syndrome and other related diseases including for family members and people living in the same household.
BEFORE and AFTER each physical contact/interaction/communication:
For people not living in the same household like personal assistants or caretakers and interpreters
(sign language, close sign language, tactile language, finger alphabet)
BEFORE each contact/interaction all should:
AFTER each contact/interaction:
In public areas:
For medical consultations:
In case of hospitalization and/or treatment due to COVID-19:
There is no known increase in risk for people who have an LHON mutation with COVID-19. This is a novel virus and ALL people are at risk. It can cause severe breathing problems which can result in death. Avoiding contacts who are sick, and following the guidance of your public health officials, are the key to limiting the spread of COVID-19. The emphasis must be placed on not getting COVID-19 for your general health, regardless of your LHON genetic status.
There is no specific data at this time to suggest that COVID-19 affects the optic nerve.
Professional medical organizations are strongly recommending that all ophthalmologists provide only urgent or emergency care. Planned appointments may be cancelled/rescheduled. While there is an effort to shift to video platforms for telehealth throughout the medical community, this may take some time, so please check with your care provider.
In addition to visual impairment problems due to retinal degeneration, syndromic forms may carry additional risk facing COVID-19 infection for such patients during the COVID-19 pandemic.
More than 30 % of inherited retinal degeneration are associated to extra ocular findings such as for example Usher Syndrome (deafness and retinal dystrophy) or Bardet-Biedl syndrome (obesity , kidney failure, diabetes) or Alström syndrome (obesity, cardiomyopathy, diabetes, kidney failure, …) or subgroups of mitochondriopathies such a s Kearns-Sayres syndromes (heart repolarisation defects, …) and many others .
In such syndromes , the visual handicap may be at the forefront and the other symptoms may have not or not much manifested, on the other hand patients may be fully aware of extra ocular complications (diabetes, obesity high blood pressure, or affecting other organs such the kidney, the heart or the lungs for instance …) .
Obesity, kidney dysfunction, diabetes, cardiac anomalies are risk factors for severe COVID-19 infection. They are also conditions that require attention for prescription drugs to fight COVID-19 (such as Hydroxychloroquine and others that are under clinical trial evaluation as to date no anti COVID -19 therapy is currently unavailable in daily care).
Deafness and visual impairment may necessitate assistance with another person (interpreter for sign language, tactile language for example)( see statement here above).
We would like to make the following recommendation for patients with syndromic retinal dystrophies :
In case of COVID-19 confirmed infection it will be important:
Some medications such as hydroxychloroquine should be prescribed under strict medical control as retinal toxicity can occur (but usually not for short treatments) and additional conditions such as renal dysfunction may enhance toxicity or lead to severe complications for instance with known heart problems.
If this treatment is regularly prescribed to you, do not change your ongoing treatment without inform your doctor.
Funding for research is today very much focused on COVID-19, the consequences on other fields will be known later.
There is a high priority for most EU governments to avoid strictly any discrimination for triage of patients with disabilities not linked to specific COVID -19 vulnerability. Most countries are managing the ICU beds at the time. Please see the EURODIS statement. Refer to your national triage guidelines issued by your national ethics committees in collaboration with Intensive Care and Reanimation Societies.
It is spring and therefore many people will experience red eyes due to pollen. Very often this can also be a sign of a viral conjunctivitis that should be treated, but has nothing to do with COVID-19. If unusual, or if you have specific concerns (especially if you have other symptoms such as cough or fever) please contact your ophthalmologist or GP. All contacts for ERN-EYE centers during the COVID-19 period are available there.