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«A Guide to Conditions of the Retina A Guide to Conditions of the Retina The production of A Guide To Conditions Of The Retina has been made possible ...»

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A Guide to

Conditions of the Retina

A Guide to

Conditions of the Retina

The production of A Guide To Conditions Of The Retina has been made

possible by an unrestricted educational grant from Bayer Healthcare.

This publication is proudly endorsed by:

Written and edited by the Communications Department

at Fighting Blindness:

Dr Maria Meehan, Research Manager

Anna Moran, External Affairs Manager

Caitríona Dunne, Communications Officer We are very grateful for the expert guidance of Mr David Keegan, Mater Misericordiae Hospital, Dublin; Dr Paul Kenna, Royal Victoria Eye and Ear Hospital / Trinity College Dublin; and Prof Jane Farrar, Trinity College Dublin, in the development of this material.

All information current as of November 2014 This publication is also available online and in audio format.

Please contact Fighting Blindness on 01 6789 004 or info@fightingblindness.ie to request a copy.

Foreword On behalf of the Irish College of Ophthalmologists, I am pleased to introduce this Guide to Conditions of the Retina compiled by Fighting Blindness.

Many people in Ireland are living with severe vision loss, a significant proportion of which is due to retinal degenerative conditions. For individuals and families who have been diagnosed with a retinopathy, access to clear, relevant, detailed and easily understandable information is essential. Unfortunately, due to the rare nature of some retinal conditions, information in this format has not in the past always been readily available.

The value of providing information and support to people with conditions of the retina - as well as to the doctors who care for them - cannot be underestimated. Fighting Blindness has been doing this successfully for many years through their support services and events, and has been a real resource to Irish people who are dealing with this often life changing news. The production of this Guide to Conditions of the Retina is a shining example of a strong resource that will be invaluable to eye doctors and their patients to help them understand the conditions they are facing, as well as explaining the options that are available.

Miss Marie Hickey-Dwyer President, Irish College of Ophthalmologists Contents Introduction Foreword from Miss Marie Hickey-Dwyer, President, Irish College of Ophthalmologists 3 Welcome Note from Avril Daly, CEO, Fighting Blindness 7 Fighting Blindness About Fighting Blindness 10 Cure. Support. Empower. 11 Insight Counselling Service The Benefit of Psychotherapy 14 About Insight Counselling Service 15 Support Services 16 Your Eyes How Your Eyes Work 20 The Spectrum of Sight Loss

–  –  –

Other Retinal Conditions Age-related Macular Degeneration 70 Diabetes-Related Sight Loss 74 Retinal Degeneration as Part of a Syndrome 76

–  –  –

Introduction Note Welcome to the Fighting Blindness Guide to Conditions of the Retina More than 224,000 people in Ireland are affected by sight loss and this number is expected to rise to 275,000 by 2020. Many forms of sight loss are caused by degeneration of the layer of tissue at the back of the eye known as the retina, leading to variable levels of sight loss specific to each person and depending on the condition they have. At Fighting Blindness, we believe it is vital to understand the condition that affects you or your family members, so that you can make informed decisions about your eye care and the supports that may be needed now and into the future.

The good news is that researchers are investigating the conditions and identifying the problems, with the intention of developing treatments and, ultimately, cures. Some conditions, such as certain types of age-related macular degeneration and diabetesrelated sight loss, are already being successfully treated in Ireland. For other rare, genetic conditions, we are still in the early investigative stages, but positively moving from the laboratory to clinical trial stage.

The guide provides information on conditions, from basic research through to clinical trials, treatment options and relevant support services. We hope it will be a valuable and useful resource not only to individuals and families who are affected by retinal conditions, but also for the allied medical professionals who are an integral part of diagnosing, treating and caring for them.

While we have provided a substantial volume of information, we cannot expect to answer all of your questions, however we hope this resource will point you in the right direction to access further information. We also invite you to contact us at info@fightingblindness.ie if you have any particular queries.

We are here for you.

This resource has been reviewed and sanctioned by world-leading scientists and the country’s leading ophthalmic specialists, and we are grateful to them for their input. We are also very grateful to Bayer Healthcare, without whose support we would not be in a position to publish this important document.

Avril DalyChief Executive, Fighting Blindness

We believe in the dignity and respect of all people affected by sight loss, and are committed to supporting people, whatever stage they are at on their own journey. We remain a patient-led organisation and ensure that the needs of people living with sight loss are always held as our highest priority.

Fighting Blindness About Fighting Blindness Fighting Blindness is an Irish, patient-led charity that has been funding research into treatments and cures for conditions that cause sight loss since 1983. We also provide a professional counselling service for individuals and families who are affected by sight loss, and are extremely active at national and European level in the areas of advocacy and patient empowerment. At this moment, we have almost 700 members who are affected by sight loss as well as thousands of supporters and other stakeholders who are actively involved in the organisation. We represent the 224,000 people in Ireland who are living with severe vision loss.

Founded in 1983, Fighting Blindness originally operated as a support group for people who had been diagnosed with a genetic form of sight loss. The determination of those involved moved them to act powerfully with the belief that someday treatments and cures would be available for the conditions affecting them. They knew that the key was to investigate the disorders, and that meant investing in research. We have come a long way since those early days. To date, Fighting Blindness has invested more than €15 million into research in Ireland, covering over 70 projects. We have been at the forefront of some of the most significant scientific breakthroughs in the genetics of inherited eye disease, and we are now moving into the realm of clinical trials.

We believe in the dignity and respect of all people affected by sight loss, and are committed to supporting people, whatever stage they are at on their own journey. We remain a patient-led organisation and ensure that the needs of people living with sight loss are always held as our highest priority.

Cure. Support. Empower.

The three-tiered approach of our strategy – Cure. Support. Empower. – informs everything that we do. We are excited and invested in the future, so we continue to search for treatments and cures for sight loss. However, we know that facing a diagnosis can be extremely difficult for the individual affected, as well as their wider family and network.

Often, the nature of genetic conditions means that multiple members of a family can be affected, increasing the impact of the reality of sight loss. We actively support, counsel, inform and assist people on that journey. It is also crucial that we act positively and advocate on behalf of people with sight loss to ensure that the patient voice is always heard in issues of policy, healthcare and services.

Our Purpose Cure Promote and facilitate the development of treatments and cures which are accessible to all patients affected by sight loss.

Support Develop our counselling service into a nationwide programme, ensuring access and support of the highest standard is available to patients and family members who are living with sight loss.

Empower Work in partnership with all stakeholder groups in the areas of health, science, industry and government to empower patients and to achieve the greatest impact in the global fight against blindness.

My daughter rapidly lost a major portion of her eyesight when she was eleven as a result of a genetic condition called Stargardt disease. Since then Fighting Blindness have been invaluable in terms of the support, information and hope they provide through their great counselling and work towards finding cures.

Ger, Kilkenny


The Benefits of Psychotherapy Sight is probably our most treasured sense, and the thought of losing it naturally gives rise to feelings of fear and uncertainty about the future. The issues that a person with sight loss faces are both practical and psychological in nature as one makes the transition from a sighted to a partially or even non-sighted lifestyle.

The journey of adapting and coping with new and uninvited circumstance is unique for each individual. That needs to be understood and respected by all who offer encouragement and assistance in order to ensure that the process of adjustment is not impeded.

At such a challenging time, engaging in psychotherapy can help. Working with a psychotherapist in a safe, trusting and nonjudgemental environment allows the individual with sight loss the time and space to make sense of what is actually happening to them, away from the pressure of well-meaning but often illinformed and anxious family and friends. With the appropriate support and guidance it is possible to work through and surmount difficulties to find new and life-enhancing meaning and purpose in living.

The psychotherapist offers a relationship where the person’s innate inner wisdom and potential for positive change can be realised and harnessed. By freeing the natural healing process in the client, the integrity of personhood is honoured and championed. It takes time, commitment and courage to undertake such a journey but with the help and facilitation of a trained psychotherapist it is possible to reach the desired destination.

Sometimes life can be unfair. We study hard but don’t achieve the hoped for grade; we train assiduously but never get picked for the first team; we work enthusiastically but are overlooked for promotion; we invest cautiously but the stock market crashes;

we experience bereavement and the grief that ensues; and we risk loving another only to be rejected. But we still survive. The human being is designed to heal given the right circumstances and opportunities. We can’t stop bad things happening; we can only choose how to respond. We take our life experiences and mine them for the gold of wisdom that lights our path through dark and alien territory. We grow and evolve so that sight loss informs but does not have to determine how we live our lives.

It is not just the individual with sight loss who is affected but also their partner, children, extended family and friends. At Insight, we work with all those affected directly and indirectly by sight loss. We offer a range of services including psychotherapy, support groups and technological assistance in conjunction with other relevant agencies.

Sight loss is a life-changing experience, but not a life-ending one. We are here to help.

John Delany, Senior Counselling Manager Insight Counselling Service Insight Counselling Service The Insight Counselling Service is a professional counselling service for people and families who are affected by sight loss.

The centre was established by Fighting Blindness in 2002 to help people cope with the challenges of being diagnosed with, and living with, conditions that cause sight loss.

Losing your vision can also impact your family and friends, so the service can help those close to you adjust to new challenges as well.

No matter what your level of sight loss, we are here to help and provide any support you may need. We offer a variety of services and invite you to get in touch if there is anything that you feel may be of benefit to you.

The Insight Counselling Service can be contacted using the details below:

Email insight@fightingblindness.ie or call Fighting Blindness on 01 6789 004 and we will put you in contact with the Insight Counselling Service.

Support Services Crisis Counselling Crisis counselling can help individuals deal with an upsetting event or situation by offering assistance and support, while aiming to improve a person’s coping strategies in the here and now. It is usually for a short period of time.

Long Term Psychotherapy This involves developing a therapeutic relationship over time with a therapist in order to address mental health concerns or to deal with a source of life stress. It can help the person to develop skills for dealing with or overcoming stress, worries, problematic thoughts or behaviours.

Couples’ Therapy This type of support is often very useful in providing a safe and private setting for a couple to work through challenges together, whether in their relationship or as a result of external circumstances. It is important that each partner in the relationship feels that they have equal say, in a balanced session.

Family Support Family sessions can involve everyone and can be comprised entirely of adults, or can involve children too, if suitable. It provides a setting that is respectful of each person’s position so that when the family group is leaving, they all feel that they’ve had a chance to be heard and understood.

Support Groups In support groups, the individuals support each other, while the therapist facilitates and ensures that nobody is dominating the session. These sessions are about sharing experiences as opposed to telling another person what to do. They provide a safe environment which encourages people to interact. These groups are organic and develop around the needs on that particular day, rather than following a set programme.

We currently hold monthly support groups in Dublin, Cork and Limerick on the first Wednesday, last Wednesday and third Thursday of the month respectively.

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