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Patients Frequently Asked Questions

As a patient with visual impairment or blindness am I at specific risk?

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.

 

I wear contact lenses what should I switch to glasses?

It is recommended to switch to glasses thus avoiding manipulation of the lenses and in addition wearing glasses protects from droplets.

 

AAO : Prevent infection with proper contact lens care

 

When should a patient be referred to an eye specialist despite restricted access due to COVID-19 pandemic?

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; …).

You can find a special section on this website about the status of the Hospitals member of ERN -EYE in this COVID-19 pandemic period.

ERN-EYE : Updates on COVID-19

 

If a referral to an eye specialist was planned or has been arranged what special precautions are needed?

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. 

  • I wash my hands frequently
  • I maintain social distancing
  • I strickly avoid touching eyes, nose and mouth
  • I cover mouth and nose when coughing or sneezing by doing this in my elbow
  • I wear a mask if possible
  • I remember to throw tissues, masks, etc ... into a closed bin immediately after use

 


 

I am blind or visually impaired can a family member or assistant come with me to the clinic and which precautions are to be taken?

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…

 

If I have a guide dog can I bring it with me?

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).

World Organization for animal health : Recommendations on COVID-19

 


 

What happens if I am waiting for genetic testing results?

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.

 

If a patient is participating in a clinical trial, what is happening?

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:

EMA : Guidance on COVID-19

 

What is the impact of COVID-19 therapies on the rare eye condition?

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).  

ERN-EYE : Statements form our members

AAO : Important coronavirus updates for ophthalmologists 

 


 

General information about COVID-19

International COVID-19 information WHO:

WHO : Coronavirus (COVID-19) advice for public

 

For Europe:  European Center of Disease Prevention and Control CDPC:

European Center of Disease Prevention and Control CDPC : COVID-19

 

For the US: COVID-19 Information Center of Disease Control and Prevention CDC:

Center of Disease Control and Prevention CDC : COVID-19 Information 

 

For COVID-19 information in your country see website of your national Health Authority.

 

Uveitis in the COVID-19 epidemic phase

The reply is provided by Dr Christine Fardeau, CRMR OPHTARA, Hôpital de la Pitié Salpêtrière, Paris 

 

Question: I have uveitis treated with corticosteroids, should I stop the treatment?

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.

 

Question: I have uveitis treated with azathioprim (Imurel® Imuran®), mycophenolate mofetil (Cellcept®), methotrexate or anti-TNF (adalimumab Humira®, biosimilar Imraldi® Amgevita®…, and infliximab Remicade® biflimilar Inflectra®, Flixabi®…), anti Interleukin 6 (anti receptor tocilizumab Roactemra®…), interferon (interferon alpha and beta, and peginterferon), or cyclosporine (Neoral® Sandimmune®…) should I stop the treatment?

 

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.

 


 

I have Usher syndrome; are there specific recommendations?

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:

 

Usher Initiative Austria: Guidelines for Usher Syndrome and other related syndromes

 

 

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:

  • wash your hands 20 seconds following the instructions of the World Health Organisation WHO with liquid soap or use alcoholic hand sanitizer


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:

  • wear face masks (disposable or self-made and washable)
  • wash hands or use hand sanitizer according to WHO recommendations
  • disposable gloves (or cotton) recommended

 

AFTER each contact/interaction:

  • dispose masks and gloves in household waste or
  • wash cotton masks and gloves
  • use hand sanitizer or wash hands

 

In public areas:

  • leave home only in accordance with your national containment directives
  • never touch your face (most specifically mouth, nose, eyes) to prevent infection
  • wash hands or use hand sanitizer after each contact with surfaces or packaging material (plastic, metal, cardboard, paper) when in public transports, taxis or when shopping daily needs
  • wear masks and gloves (disposable or washable)
  • try to save surgical and FFP masks for Healthcare Professionals and caretakers and other vulnerable groups at higher risk
  • use disposable tissue or sneeze into elbow to protect others

 

For medical consultations:

  • contact your doctor or healthcare provider by phone or email before any consultation
  • see health care professionals or go to hospital only in case of absolute emergency (immediate vision loss is an urgency)
  • apply additional precautions as described above
  • schedule regular assessments and follow-ups (eye, ENT, …) for later

 

In case of hospitalization and/or treatment due to COVID-19:

  • no self-medication! (beware: hydroxychloroquine or chloroquine can be harmful for retina and toxic if associated to specific conditions such as heart problems)
  • all treatments have to be strictly prescribed by healthcare professionals only and to be agreed with your eye expert (beware: hyrdoxychloroquine or chloroquine use contra-indicated with retinal or neuroophthalmological conditions)

 


 

I have Leber’s Optic Neuropathy are there special recommendations?

The following expert update has been provided to us by Pr Patrick Yu Wai Man (ERN-EYE member, Moorfields Eye Hospital, London UK) in collaboration with LHON Experts:

Dr. Valerio Carelli (Bologna, Italy), Dr. Rustum Karanjia (Ottawa, Canada), Dr. Nancy Newman (Atlanta, USA)  , Dr. Alfredo Sadun (Pasadena, California)  and Dr. Patrick Yu-Wai-Man (Moorfields Eye Hospital, London, UK)  provided the following responses to these questions.

 

Is the LHON community at any greater risk from 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.

 

Are individuals carrying a LHON mutation but currently asymptomatic at any greater risk of onset of vision loss if they should become affected by COVID-19?

There is no specific data at this time to suggest that COVID-19 affects the optic nerve.

 

Are ophthalmologists and neuro-ophthalmologists seeing LHON patients?

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. 

 


 

I have a syndromic form of  retinitis pigmentosa such as Bardet-Biedl or Alström syndrome are there specific recommendations?

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 :

  • Importance of protective measures after each interaction: 1° hand washing with soap or alcoholic hand sanitizer 2° wearing a facial mask 3° avoiding touching the face and mouth and eyes 4° No reusing of disposable masks or gloves (use waste)   or washing of the non disposable ones
  • Therapies for the extraocular conditions (diabetes, kidney dysfunction,…) have to be continued and monitored by the GP or the specialist (nephrologist, endocrinologist , cardiologist, …).
  • The patient has to check beforehand if a consultation is programmed whether it is maintained or not (by phone, by mail).
  • Discontinuation of therapies are to be avoided by all means and contact with the ad hoc physicians have to be maintained. Teleconsultation has to be privileged and asked for if a consultation has been programmed previously.
  • In case of difficulties the ERN-EYE centers from the country may be of help.
  • Concerning ophthalmic surveillance and regular follow-up, in most cases it will be postponed for regular follow-up. In special circumstances, an appointment has to be made especially in emergencies situations: acute loss of vision, unusual acute pain….

 

 In case of COVID-19 confirmed infection it will be important:

  • To specify the syndromic context by informing the medical doctor and all health professionals that additional conditions are associated to the retinal condition (ie: diabetes, cardiomyopathy, …), a useful link  by ORPHANET should be provided to the career.
  • To AVOID SELF-MEDICATION – the Medical doctor will prescribe what is necessary and/or authorized after a medical work up especially in the syndromic context.

 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.

 


 

I usually take hydroxychloroquine prescribed by my doctor for my lupus/arthritis, should I continue the treatment?

If this treatment is regularly prescribed to you, do not change your ongoing treatment without inform your doctor.

 


 

What is the impact on research funding as a whole (sponsors, investors, public funding) in times of focus on COVID-19 research and containment?

Funding for research is today very much focused on COVID-19, the consequences on other fields will be known later.

 


 

Would being visually (and or hearing) disabled have an impact on triage in case of shortage in ICUS

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.

EURORDIS Statement : the rare disease community alerts over discrimination in critical care

 

 


 

What should I do if I experience a red eye?

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.

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