Posted on January 17, 2018
As Shakespeare rightly said, the eyes are, indeed, our windows to the world, and the windows to our soul. Of all the sense organs, the gift of sight is the most precious, and the impairment of vision is considered the most profound disability. It is heartening to note that not all blindness is irreversible, and today, medical science has advanced enough to restore vision for a lot of these patients, who struggle with day to day living because of the vision impairment. According to WHO (World Health Organization), corneal blindness is the fourth leading cause of global blindness after cataract, glaucoma and age related macular degeneration, and can be tackled with corneal transplantation. Corneal transplantation or keratoplasty is dependent on eye donation, the voluntary donation of eyes in the event of a person’s death.
Magnitude of Blindness and Disease burden
An estimated 35 million people are either already or going blind in the developing world. Most of these can be cured with a proper intervention. As many as 3 million of them can have useful vision back following a corneal transplant, and more than half of these patients (sixty percent) are actually children under the age of twelve years.
It is of immense concern that almost half of the world’s blind population resides in India, in fact, the number of people in India who are blind is as high as15 million. 6.8 million of these suffer from corneal blindness, with vision less than 6/60 in at least one eye. As many as 1 million are blind in both eyes, and this bilateral corneal blindness is potentially reversible.
The number of people with corneal blindness in India is projected to increase to 10.6 million by 2020. As many as 3 million of these people with profound vision impairment can actually benefit from corneal transplantation, which is replacement of the cornea surgically. To clear this immense backlog of patients, and to effectively tackle the patients who are added to this group, 150,000 corneal transplants must be performed every year in India alone.
To understand the process of decreasing the burden of corneal blindness, it is important to understand the disease process and management. This article aims to clarify the myths and misgivings around corneal blindness and eye donation.
What is corneal blindness? What is the solution?
The cornea is the clear transparent, dome shaped part of the eye which allows light to enter the eye through the pupil. This light is also focused by the cornea on to the retina, which is the light sensitive part of the eye at the back of the eye. Any loss of corneal transparency results in blocking of the eye, and the eye cannot enter the eye. This impairs vision, despite a functioning eye apparatus. When this loss of transparency is profound, that is, when the cornea becomes white instead of transparent, almost no light can enter the eye, resulting in corneal blindness.
The causes of corneal opacity or lack of transparency are several. These include:
- Trauma: Both mechanical and chemical injuries can cause corneal opacities.
- Infections: Ulcers and infections called keratitis. Vitamin A deficiency leads to an increased propensity to corneal infections due to dryness, and overall malnutrition.
- Congenital anomalies: Some babies are born with opaque corneas due to errors of development or metabolism.
The good news about this cause of profound loss of vision is that this kind of blindness is reversible. In case the opaque cornea is replaced by a donated clear cornea, the patient can see again. This surgery is called a corneal transplant.
The bad news is that there are no artificial corneas that can be transplanted. These patients wait patiently and eagerly for people to donate their corneas, which can be taken after the death of a person, and used to give a new life to others.
Is it possible to use artificial tissue to help those who need this procedure?
There are types of surgery called keratoprostheses, which use artificial cornea like devices. These are very difficult to use, and have a success rate much lower than that of a corneal transplant. Its use is limited to those cases in which it is not possible to transplant a cornea, for example, in patients with severe scarring of the eye socket. There are newer types of prostheses being developed to substitute for the cornea, but there is yet to be an artificial device or tissue which functions as well as a human-donated cornea.
Who can donate eyes?
Eyes can only be donated when we don’t need them, that is, after a person’s death. Those of us who wish for eyes to be used after we die, can pledge them while we are alive.
Pledging eyes is a noble act which ensures that your eyes continue to help someone else see the world, even after you are no more. It ensures that your eyes light up someone else’s life even after you aren’t around. This is indeed the greatest gift of all.
It is an altruistic act, perhaps the greatest charity of all, and is completely voluntary. The eye donation of the deceased has to be authorized by the next of kin even if the deceased has pledged his or her eyes. And a corollary to that is that the next of kin can also give permission to donate eyes of the deceased, even if he or she did not pledge to donate his / her eyes before death.
The salient features to remember the criteria for eye donation are:
- People of all ages and gender can donate their cornea.
- Use of spectacles for short sightedness, long sightedness or astigmatism or even those operated for cataract is also not a contraindication.
- Patients who are diabetics, those suffering from hypertension, asthma patients and those without communicable diseases can also donate eyes.
The only contraindications for eye donation are listed below.
- Patients diagnosed with or died from AIDS, Hepatitis B or C, rabies, septicemia, acute leukemia, tetanus, cholera, meningitis or encephalitis cannot donate eyes. Eyes are not donated also in case death by drowning.
In conditions considered absolute contraindications for transplantation, the donor family is informed clearly and made fully aware of this fact. Eyes are not be retrieved unless the donor family is fully aware of this and still wishes to donate.
How are the donated eyes used?
Traditionally each person who donates eyes can provide the gift of sight to two blind people. With the advent of component surgery of the cornea (in which layer of the cornea is transplanted for a specific indication) one eye has actually provided sight to five patients. The impact of eye donation is tremendous, and this act of giving is perhaps the greatest gift you can give. When you donate a pair of eyes, you actually enable up to ten sight saving operations.
The corneas and sclera are used for transplant. And all eyes donated to the eye bank are used, and a record is maintained. Eyes that are not medically suitable for corneal transplant may be used for medical research and education. These “unfit” donated eyes provide the doctors with critical and valuable insight into many conditions of the eyes and can help to find the cure for several diseases hitherto considered untreatable.
Eye donation thus not only restores sight for the blind, it also makes research into new treatments possible.
What do I have to do to pledge my eyes?
In case you are above eighteen years of age, all you have to do to pledge your eyes is to make the decision. When you choose to donate your eyes, you choose to perform a great act of selfless giving, and you must be immensely proud of your decision.
It is important that you communicate your decision to your family, since in the event of your demise, it is they who will need to inform the eye bank of your pledge, so that they may collect your eyes at the earliest.
Eye donation can be performed after death also, unlike several oragns which must be harvested while the patient is merely brain -dead. It is therefore important that you communicate your wishes to your next of kin, so they remember your act of altruism in their time of grief. It is very important that they understand and support your organ and tissue donation decision because your family’s support is needed for donation to go ahead. Dealing with the death of a loved one is a difficult time, and most people will find it difficult to make this important decision quickly.
To pledge your eyes, you need to fill a form which is available in all major hospital and eye banks. You can access this form online also, the link for doing so is provided here. In fact, this link will provide you with all the information you need to register on the website of the Eye Bank Association of India.
How to register: http://ebai.org/donator-registration/
What is an Eye Bank?
An eye bank is a non-profit organization, usually organized with community support. It is managed by a medical director, eye bank manager, grief counsellor and eye bank technicians. Eye banks are responsible for the collection, evaluation and distribution of the eyes donated by the community at large. All eyes donated are respectfully handled and sorted after evaluation using strict medical standards. Those donated eyes found suitable for transplantation are then distributed to the associated eye hospitals credentialed for corneal transplants. Those eyes which are not eligible for corneal transplant are used for research and medical education, which are also important functions of the eye bank.
What exactly is it that an eye bank does?
- The eye bank is the first to respond for any calls regarding eye donation. The eye bank team is available round the clock to attend the calls, and to reach the site of the donor as soon as possible.
- The eye bank is responsible for retrieval of the donor tissue and maintain meticulous records regarding its utilization.
- The eye bank also evaluates and grades corneas. It is responsible for storing, transporting and providing donor tissue including corneas and sclera to surgeons for transplants.
- Another essential function of the eye bank is to enable and facilitate corneal research using eyes unsuitable for grafts to find newer techniques, improve preservation methods and to train corneal surgeons.
- The eye bank is also responsible for increasing public awareness about eye donation and eye banking.
The list of all the eye banks in India can be accessed at http://ebai.org/eye-bank-list/
The Eye Donation fortnight is celebrated between August 25th and Sept 8th each year, under the leadership of the Eye Bank Association of India.
How does one contact the eye bank?
The universal phone number in India to contact the eye bank is 1919. This is toll-free numbers are running across all states in India and available 24×7, for eye donation as well as information regarding eye banks.
Enumerated below is a list of the eye banks (phone numbers courtesy Delhi Government) along with the phone numbers that you can reach out to for more information.
|Name ||Phone Number |
|Guru Nanak Eye Centre ||23234612 |
|National Eye Bank (AIIMS) ||26569461 |
|AIIMS(Emergency) ||26569461 |
|Rotary Delhi Centre Eye Bank, Sir Ganga Ram Hospital ||25781837 |
|Sir Ganga Ram Hospital ||25721800 |
|Apollo Eye Bank ||26925858 |
More information about these is available at http://delhi.gov.in/wps/wcm/connect/doit/Delhi+Govt/Delhi+Home/Departments/Citizen+Services/Important+Telephone+Numbers/Eye+Banks)
In addition to these, there are several eye banks run by private hospitals and charitable trusts, details of which can easily obtained online.
What should I do if I am entrusted with taking care of the departed soul while the eye bank team arrives to collect the eyes?
In case you are entrusted with this extremely critical task, you must take this responsibility very seriously, since you are not only responsible for carrying out the departed soul’s dearest wishes, but also critical for providing sight to at least two blind persons, if not more. Time is of essence, so you must not waste time in calling the eye bank, since the eyes can only be harvested for up to six to eight hours after death
These are the critical precautions to be taken to preserve the eyes:
- Close the eyes of the deceased gently, and place a piece moist cotton over them.
- Raise the head with great care by about six inches with a pillow, to lessen incidence of bleeding during removal of the eyes.
- Ensure that all fans where the dead body is laid to rest are switched off. This reduces desiccation and drying of the eyes and corneas.
- If acceptable to the family, try and put a polythene cover with few ice cubes on forehead, especially in the summer months.
- If possible instill antibiotic eye drops periodically to prevent infection and drying of the cornea.
- Inform eye bank immediately after getting consent from the next of kin of the deceased.
What happens during the harvesting of eyes, or eye donation?
- Once the eye bank is informed of the will to donate eyes, a team of trained personnel, along with an eye doctor and a grief counsellor reach the house or hospital where the deceased has been laid to rest.
- This team of medical professionals will talk to the family and take a proper, written, informed consent before proceeding with the eye donation. In case the donor has already pledged his or her eyes, this process is faster.
- They might ask some questions regarding medical and family history of the donor.
- The team will work with great efficiency in collection of the donation so as to not delay any funeral arrangements. The process takes less than ten minutes from start to finish.
- The team will work in privacy to harvest the donated eyes under strict aseptic conditions, very respectfully. The area where the team harvests will be restored to its original state within minutes by the eye care professionals with great regard to the feelings of the grieving loved ones of the deceased. The team realizes and respects the act of great altruism that they are witness to, and always are extremely respectful of the families’ wishes.
- The grief counsellor will help the family resolve any last minute hesitations and questions, and thank the family for their act of charity, before transporting the donated tissue to the eye bank.
- Usually there are patients waiting for eye transplants in most hospitals, and therefore, most corneas are utilized within three to four days. Corneal and ocular donations remain viable for transplant for up to 14 days, and it is very rare for a tissue to be utilized after a week because of the immense waiting lists for corneal transplants.
- The identities of both the donor and the recipient remain confidential.
What about the appearance of the dearly departed soul?
Donating eyes (or indeed any other organ) does not affect the appearance f or funeral. After harvesting the eyes, the eye doctor places a plastic prosthetic eye in the socket, before gently closing the eyelids. The appearance of the dead body therefore is unaltered. It is imperative to remember that eye retrieval does not cause any disfigurement of the face or body, nor does it defile the dead body in any way at all.
What about my religious beliefs?
There is no religion in the world that condemns the art of giving. In fact, all religious leaders have unanimously decreed that altruistic and voluntary giving to those in need is a great act of charity and kindness. All major religions either accept organ donation or accept the right of individual members to make their own decision. Most religions are in favor of organ donation as acts of charity and as a means of saving a life.
- Hinduism: Hindus are not prohibited by religious law from donating their organs at all. In fact, Hindu mythology includes stories in which parts of the human body are used for the benefit of other humans and society. To quote the Manusmriti, “Of all the things that it is possible to donate, to donate your own body is infinitely more worthwhile”. In fact, of the ten Niyamas (virtuous acts) Daan (selfless giving) is on number three, emphasizing its importance.
- Islam: The majority of Islamic religious leaders accept organ donation during life (provided it does not harm the donor) and after death in order to save life. It must be emphasized that the dead body is in no way defiled or mutilated by the act of eye donation. To quote the Quarn, the Surat Al-Ma’idah [5:32] says: “And whoever saves one life it is as if he had saved mankind entirely. “
- Christianity: The command to “love your neighbor” was quoted by Jesus (Matthew 5:43), Paul (Romans 13:9) and James (James 2:8), it may be traced back to Leviticus 19:18. This implies that majority of Christian leaders accept organ donation once the person is dead, and the process of harvesting the organ does not take away the life of the donor.
- Buddhism and Jainism: Both these religions place great importance on compassion and charity, which are considered to be major virtues. Organ donation has been widely supported by the community leaders and monks of these religions. In fact, Buddhists consider it a great virtue to donate one’s own flesh for the sake of another.
- Sikkhism: Sikh philosophy emphasizes the importance of giving and putting others before oneself, giving great merit on selfless giving and sacrifice. This is exemplified by the behavior of all the ten Gurus. For Sikhs, the greatest ac of virtue is the act of saving a human life, and therefore donating organs after death has been advocated by all Sikh leaders.
How is the cornea transplanted?
Cornea transplant or keratoplasty is a surgical procedure in which a part, or all, of the diseased cornea is removed and healthy corneal tissue from the donor is transplanted. In this eye surgery, the diseased cornea is removed in the shape of a disc by an instrument called a trephine. A similar, slightly larger disc is removed from the donor cornea and placed on the created corneal window. This donor tissue is then stitched on to the host bed using very fine stitches or sutures.
A corneal transplant not only restores vision, it may also be performed to relieve intractable pain or other symptoms associated with diseases of the cornea.
This list conditions can be treated with a cornea transplant, is only representative and not exhaustive. The diseases that can be treated with a transplant include:
- Fuchs’ endothelial dystrophy
- Thinning of the cornea ( due to trauma or connective tissue disorders)
- Cornea scarring, caused by infection or injury
- Clouding of the cornea due to trauma, metabolic diseases or infections
- Swelling of the cornea due to damage to corneal endothelium (the inner most layer of the cornea, responsible for maintaining its transparency)
- Active Corneal ulcers, including those caused by infection or by extreme dry eyes
- Complications caused by previous eye surgery
Would someone with glaucoma, macular degeneration, or diabetic retinopathy benefit from a donor procedure such as this?
Patients with macular degeneration and diabetic retinopathy have a disease of the retina. Glaucoma is an eye condition where the optic nerve is being damaged, usually due to high eye pressure. The cornea is not affected by glaucoma, diabetic retinopathy or macular degeneration. In these patients, unless the loss of vision is because of a concomitant damage to the cornea, a corneal transplantation would not help. It must be kept in mind that glaucoma can compromise the results of a corneal transplant, and so the glaucoma must be controlled before or at the time of the corneal transplant.
How successful is a corneal transplant?
Corneal transplants are performed routinely all over the world and have a reasonable success rate. In fact, most people who receive a cornea transplant will have their vision at least partially restored. Around 93% of transplants continue to function after one year. By five years, 74% of transplants are still working well and many will continue for many more years after that. Corneal grafts are the most successful of all tissue transplants, with rejection rates ranging between 5 to 30% depending on disease for which the surgery is being performed, and age and ethnicity of the recipient.
Is the whole eye transplanted?
Only a part of the eye can be transplanted, and not the whole eye. When someone receives an “eye transplant,” they are being given a donor cornea, the clear front part of the eye. The corneal transplant requires a functioning retina and optic nerve to restore vision.
The sclera, which is the white part of the eye, may also be transplanted in case of certain diseases or as a graft in certain surgical procedures.
The limbus is the grey zone between the clear cornea and the sclera, and can also be transplanted in patients of chemical burns, severe pterygia, and conjunctival diseases.
It has been shown in recent clinical trials that human stem cells can be cultivated to become retinal pigment epithelium (RPE) cells. In the near future, we can hope for RPE transplants, which will bring hope to those with what is considered irreversible blindness today due to age related macular degeneration.
Are transplants performed more frequently on elderly patients or younger patients?
Most of the patients who receive transplants are older, since the most common cause of corneal blindness affect this age group. However, there are a lot of children and young adults who also benefit from corneal transplants.
Similarly, most of the donors are also elderly. Eye banks usually accept donations from donors between the ages of 2 to 70 years. As a rule of the thumb, patients receive corneal tissue from donors approximately the same age or younger than themselves.
Eye banks do not refuse any donations, but donations from people older than seventy five years are usually used for research purposes.
Can the eye of a living person be donated?
The simple answer to this question is no. However, in the unlikely event that the blind eye of a person is removed, but has a healthy cornea, that cornea may be used. That said, there are no instances of donation between people who are living in other circumstances. Another special circumstance where a person may donate a cornea to themselves is where one eye has some potential vision, but requires a corneal vision for restoration of functional vision, while the other eye is blind with a clear cornea. In this case, the clear cornea may be removed and transplanted to the seeing eye, after discussing the risks and benefits of the procedure in great detail with the patient.
Can someone who has had Lasik surgery donate eyes?
There is no evidence to say that the cornea from eyes that have had LASIK cannot be used for corneal transplant. However, they will probably be preferred for new forms of component surgery of the cornea. The healthy portions of the previously operated cornea can be used for this new procedure, DLEK (Deep Lamellar Endothelial Keratoplasty) that helps people with corneal swelling from cataract surgery (pseudophakic or aphakic bullous keratopathy) or Fuchs Dystrophy.
Congenital or acquired disorders of the eye that would preclude a successful outcome for the intended use e.g., a central donor corneal scar, corneas which have undergone refractive surgical procedures and corneas retrieved from patients who have been on ventilator support for >72 hrs are often not used for transplant. These eyes are also an important research tool, and can be used to device safer refractive surgery procedures and component corneal surgeries which can provide hope for millions.
Myths and beliefs around eye donation
- Myth: Donating eyes will disfigure the face of the donor, with holes in the eye socket causing face disfigurement
Fact: Not at all. Retrieval of eyes does not Eye donation does not cause any disfigurement of the face as a prosthetic is placed in the socket.
- Myth: Donating eyes when I die in this life will mean I will be blind by birth in my next life
Fact: Gifting sight to someone is an act of great virtue and charity, and this act can only be rewarded by perfect vision in the next life, if the law of karma is to be believed. This myth has no basis in religion or logic.
- Myth: If I pledge my eyes, doctors will not try to save me when I am critically ill
Fact: Completely false. Every doctor is committed to saving lives, on oath. They will never jeopardize your life or health to potentially help another patient
- Myth: My family will be distraught with my decision to donate my eyes
Fact: You will be surprised by how accepting and appreciative your loved ones will be of your decision, when you tell them you are thinking of donating your eyes in death. In fact, you will be admired for your nobility, and your action will inspire friends and family to pledge their eyes too. Also, remember you can donate your eyes even if you have a previous history of cataract surgery.
- Myth: Eyes of Indian donors are not good for corneal transplant
Fact: All eyes, irrespective nationality, race, caste, creed and religion, can be used for corneal transplantation. The eligibility of each eye of each person is assessed independently as per stringent guidelines, by a trained eye care professional. All donated eyes are used to their utmost, either for restoring vision and transplants, or for research, which will eventually help millions of blind people.
- Myth: Corneal transplantation is an experimental procedure, with poor success rates.
Fact: Corneal transplant is a routinely performed procedure the world over, and it has provided the gift of sight to millions of blind people across the world. Of all the organ transplants, corneal transplants are known to be the most successful.
- Myth: My donated eyes can be sold.
Fact: Eye donation is completely voluntary and selling. Selling/ buying human eyes, and indeed any other human organs, is illegal and is a punishable offense under the Transplantation of Human Organs Act (THOA, 1994). Eye banks have to establish and document a system of distribution that is just, equitable and fair to all patients served by the eye bank. In fact, any cost involved with cornea retrieval is borne by the eye bank.
- Myth: If I have pledged my eyes for donation, no further consents are necessary after my death.
Fact: Even if you have pledged your eyes for donation, the consent of your family members (next of kin) is essential for completing the process. Not only it is up to them to inform the eye bank of your death, but also to complete the necessary formalities before your wish to donate your eyes in the event of your death can be executed.
- Myth: My eyes cannot be donated if I have not pledged them.
Fact: If your next of kin inform the eye bank in the event of your death, and express their wish to donate your eyes, your eyes will be retrieved by the eye bank personnel.
An appeal to all
Given the magnitude of corneal blindness in our country, we should come forward to pledge, and donate, our eyes. We must overcome any superstitions, myths and wrong beliefs and try to make a positive impact on someone’s life. When we donate our eyes, we actually change someone’s life forever, for the better. The gift of sight is a gift which will never be forgotten, and will earn for you eternal gratitude from someone who will see the world through your eyes, granting your eyes immortality.
Biomedical engineers and clinician scientists all over the world are working diligently to develop artificial corneas so as to provide sight to those who await corneal transplantation. But until such time as this becomes feasible, the only hope for these patients, who are deprived of the gift of sight, is your largesse and ability to give. If each of us will donate our eyes in the event of our death, the menace of corneal blindness can be removed from our country, and indeed the world.