My Story: My Glaucoma
Stories from friends and supporters highlighting their personal journeys through diagnosis and living with glaucoma.
If you would like to share your story too please email firstname.lastname@example.org
Dr T’s words come back into my consciousness and I listen to them.
“We’ve got it early. That’s good and offers the best outcomes. You will not go blind in your lifetime.”
I was diagnosed with glaucoma 9 years ago when I was 52 years old.
I was diagnosed with glaucoma 9 years ago when I was 53 years old.
When I was 44 years old I was diagnosed with open-angle glaucoma in both eyes.
I was diagnosed with Congenital Glaucoma at 2 months after my parents noticed I would cry when the sunlight hit my eyes.
I was diagnosed with glaucoma 40 years ago when I was 45 years old.
I was diagnosed with glaucoma about 18 months ago when I was 66 years old.
I was diagnosed with glaucoma 14 years ago when I was 53 years old.
I was diagnosed with glaucoma 4 years ago, when I was 74 years old.
Hi, I'm Kitt. I was born with congenital glaucoma in 2017.
I was diagnosed with glaucoma 10 years ago, when I was 45 years old.
I was diagnosed with glaucoma 9 years ago, when I was 62 years old.
I was diagnosed with glaucoma 34 years ago, when I was 43-44 years old.
I was diagnosed with Glaucoma 48 years ago, when I was 35 years old.
I was diagnosed with glaucoma 23 years ago, when I was 30 years old.
I was diagnosed with glaucoma 31 years ago, when I was 25 years old.
I was diagnosed with glaucoma 37 years ago, when I was 48 years old.
I was diagnosed with glaucoma 45 years ago, when I was 33 years old.
I was diagnosed with glaucoma 8 years ago, when I was 70 years old.
I was diagnosed with glaucoma 7 years ago, when I was 60 years old.
I had no idea I had glaucoma until I changed optometrist in 2001. That very observant man did a regular eye examination some 20 years ago and discovered a problem there and immediately referred me to an ophthalmologist.
When I was first diagnosed with glaucoma I really didn’t have a clue what it was all about. I thought oh well it’s another problem to deal with in life. I really underestimated what glaucoma was all about. Now I find glaucoma is one of the most frightening diseases I could ever know about – but it’s not going to win in my case, I’m very positive about the way I’m facing it and the way it’s being treated by the best people I know. I have a great specialist who I visit every three months.
I would have been about 52 or 53 when I was first diagnosed with glaucoma. Interestingly enough my ophthalmologist told me if I had gone another 5 or 6 years I’d probably be blind by now.
I couldn’t picture being blind, just the thought of it is frightening. So I do everything I possibly can to look after my eyes. My glaucoma is in an advanced stage – but I still have very good eyesight in both eyes and I have an unrestricted driving license.
My dear Mum had glaucoma. I knew that she had glaucoma when I was a teenager, but I didn’t know it was hereditary. I was never told it could be passed on by optometrists or anyone else for that matter; or my mum, she wasn’t aware of it either. I just wish there would have been a greater education about glaucoma and its effects then, as there is now.
I have a brother and two sisters, and I make sure they get tested for glaucoma regularly. Thankfully none of them have been found to have glaucoma and neither have my children but they all get checked regularly.
I urge people to get tested for glaucoma. When you go for your next regular eye test ask specifically for a test for glaucoma. It’s a hidden disease, so you don’t know if you’ve got it, and if there is a history in the family please get tested very quickly.
Sydney resident Cristina Lynn shares her glaucoma journey.
My Mum has had glaucoma for many years, so I knew I had to keep an eye on my own vision, making sure to visit my optometrist for an annual check-up. For a long time everything was OK and then suddenly it wasn’t. While doing the usual checks a significant loss of vision was noted, particularly in my left eye, and I was referred to an eye specialist. I discovered my type of glaucoma presents itself with relatively low pressure levels and is concentrated in the centre of my vision; as opposed to the more usual loss of peripheral vision. Over time, the Specialist recommended I have trabeculectomies in both eyes as laser surgery was not considered sufficient to resolve the issue. Last year I had a cataract operation in my right eye (the good one), which means that I don’t need to use distance glasses anymore and can drive safely and more comfortably at night.
My present care is to use one eye drop in my left eye and regular visits to the Specialist. During a visit some twelve months ago, while discussing what other things I might try to ensure I maintain my current levels of vision, it was suggested I contact Glaucoma Australia. Until then I had been unaware of its existence. One thing led to another and I now find myself its honorary treasurer and Council Member- not what I was expecting when I first contacted the Association! It has made me realise, though, the importance of early detection of this condition for as many people as possible, particularly those with a family history.
Ever since my diagnosis I have encouraged my twin sisters to get checked. Just recently they were both found to have angle closure glaucoma, a rarer form of the disease, which develops very quickly and demands immediate attention. Luckily it was treated with laser surgery and my sisters are both now under care.
I have always placed complete trust in my optometrist and ophthalmologist who are now an integral part of my life. I am also fortunate that I belong to a generation that makes full use of technology, which allows me to function effectively in both my professional and personal life. The ability to regulate the size of the font on my PC and my mobile, as well as being able to read using Kindle are amazing assets, which were unavailable to people of my mother’s generation.
Canberra resident Ann Richens was diagnosed with glaucoma 25 years ago.
“I had broken my glasses and I went to the optometrist to have them repaired. He examined my eyes and found I had very high intraocular pressure and thought I had had this for some time. I always had regular check-ups with eye care professionals so this came as a bit of a shock.
At that time, I was living on the North Coast of NSW and was referred to an eye specialist who diagnosed glaucoma, but I found a lack of continuity with visiting specialists and I decided to find an ophthalmologist in Sydney. I used the Glaucoma Australia ‘Find a Professional’ page on their website and I chose a specialist in Ryde.
I thought I should discuss glaucoma with my family in the UK. I remembered that an elderly Aunt had gone blind although I didn’t know what had been the cause. I don’t recall if it was because I told my family about my glaucoma that my cousin was also diagnosed or whether my cousin had already been diagnosed but I began to think that glaucoma runs in families and made sure my own 4 children were aware of glaucoma and the need for optic nerve checks. Young people seem a bit blasé about it but when Susan, one of my daughters, went for her regular eye check she mentioned that glaucoma was in her family and asked for an optic nerve check. She was subsequently diagnosed with glaucoma at about the same age as I had been when diagnosed.
Spurred on that I can make a difference, I have been talking to my grandchildren as well. There are 9 of them and so far one of my grandsons is being identified as a glaucoma suspect – he is only in his 20s, but if people find it early enough and have it monitored then there is a really good chance of not going blind. Early diagnosis and treatment stops a lot of stress caused by late detection. I have had cataract surgery and a Trabeculectomy and I am scheduled for another shortly. It isn’t pleasant – early diagnosis might have also prevented me having to go through these operations.
Whenever I speak to other people who have glaucoma and feel scared or don’t know how to find a specialist, I refer them to Glaucoma Australia. I have found in my glaucoma journey that it is important to find eye health professionals that you can have confidence in, knowing that they understand.
If you have glaucoma one of the best gifts you can give your family is knowing they need to have their eyes tested, including an optic nerve check.
Sydney resident Sari Browne OAM was diagnosed with glaucoma 24 years ago.
From when I was quite young my mother used to take me to the eye specialist every 12 months for an eye check-up. Those regular appointments continued until I was diagnosed with glaucoma at age 55. During that time the first specialist retired, I went to another one, who sadly died and then to another specialist.
At age 55, this third specialist diagnosed that I had glaucoma in both eyes. This came as a shock as no-one in my family had glaucoma as far as I knew.
Seeking a second opinion, I visited yet another ophthalmologist, this time one who specialises in glaucoma, who confirmed that I had the very early stages of the disease. He has been treating me ever since.
It has been an interesting journey. I have used all the available eye drops. The pressures are variable and the disease has become quite aggressive over time. As a result I have undergone several procedures – trabeculectomy, express shunt, 5FU and sweeping needle, and cataract surgery. After my cataract surgery I also had two deep sclerectomy operations on my left eye.
I continue to have regular check-ups, including field tests and HRT. Fortunately I am in very good hands and, apart from the glaucoma, my health has been very good until recently when further surgery was cancelled when I had shingles and I developed polymyalgia and breast cancer last year. My vision, I think, has also been good, for my age, until the last couple of years.
Recently though, I have been told that if I don’t have urgent surgery I will be blind within 12 months. Already I have more difficulty seeing and I am booked to have surgery as this issue of Glaucoma News is being distributed. The plan is to insert a Baerveldt Tube and to have a scleral patch graft. Here’s hoping everything will work out and I will not lose any more vision.
Thankfully I have a very supportive husband and family who are well aware of my condition. They all have regular eye checks as well, which is a good thing.
My name is Debra Ciuffetelli and I have been living with Congenital Glaucoma for over 61 years.
I was born in the 1950’s blind in my left eye at birth. My right eye seemed to be unaffected by glaucoma.
My left eye was cloudy and large and my mother’s recollection tells me that I cried often, suffered extreme headaches, and was able to click my joints in and out, all due to the pain experienced. I would also bang my head against the wall. My parents were told “they should never have married”. A difficult thing to hear and with no clarification of that statement, my parents have suffered many feelings of guilt and sadness. They are now in their 90’s and still to this day feel great anguish, by that statement. I have always had their love and support, and I am so glad now that there are resources to explain why these things happen. With the help of Glaucoma Australia and the wonderful work of ANZRAG we now have the information with our DNA testing. Everything is now finally in perspective.
At 14 months of age I had my first surgery as we had to wait for the small surgical instruments to arrive from America. My case was rare and my Doctor tried to repair the abnormal system and create some drainage for the eye, which did relieve some of the pressure. The operation could not fix the total loss of vision. My eye was very large and cloudy and “Lazy” turning inwards. I would have a number of surgeries to try and correct this over the next years.
I also attended many seminars and meetings for my Glaucoma. I recall many Doctors and Student Doctors looking into my eyes, sometimes there would be up to 10 observing and learning about Congenital Glaucoma. As a child it was difficult, but even then as a young child, I knew the importance of allowing these Doctors to study my eyes. I have always hoped that I could help someone else by attending these meetings.
I would go to the Hospital on a regular basis sometimes 4 times a week as I also had other health issues. I was prescribed numerous eye drops which I continued to take until the age of fourteen when I was diagnosed with Glaucoma in my right eye. This was devastating to my parents and myself. I remember sitting in the chair and my poor Surgeon explaining this to us, he was visibly upset by this news. Glaucoma had not been detected in any of my family and it was still a mystery as to how and why I suffered from Congenital Glaucoma. I began the use of glaucoma drops in the right eye to control the pressure and continued until 1985 when my left eye once again began to turn inwards and ‘Squint’ surgery followed .
My right eye had been ‘behaving’ itself well until 1988 when I suddenly suffered blinding headaches, dizziness and nausea. I was treated urgently, however the pressure continued to rise very quickly with a reading of 48mmHg. I had emergency Right Trabeculectomy Surgery and continued to have many drops around the clock for many weeks. I was extremely lucky to keep my vision and after a difficult three months I was able to resume my ‘normal’ life and activities.
In 1990 I once again experienced blinding headaches, high pressures, dizziness and nausea. I underwent another emergency Right Trabeculectomy, my Surgeon at the time thought long and hard about how to stop the site from closing and so the process of having 5-FU injections every day for many weeks which caused the eye not to heal and keep ulcerated was decided upon. This proved to be a great success, even though it was one of the most difficult times in my life. I was now left with a beautiful open bleb and my pressure was stable. It is often commented how ‘beautiful’ that bleb is. The Surgeon who did this operation, is my ‘Hero” and to this day I have him to be thankful for saving my sight. I have heard him called a “Legend” in the medical world. What a wonderful legacy.
In 1991 my left eye had a pressure of around 60 mmHg and I experienced severe headaches. I had a left Trabeculectomy. My eye went from being very large to very small and became very pale and cloudy. My headaches eventually returned. In 1998 I decided to have a Left Eye Enucleation and Ptosis surgery followed. This was a very difficult time in my life but after nine months, I had a wonderful prosthetic eye and no pain. This surgery was one of the biggest decisions of my life and I was so lucky that it was so successful. For the first time ever, no headache or pain.
Over the years I have had laser surgery and other procedures, such as Cataract Surgery on the Right eye and on my Left Prosthetic eye I developed a Pyogenic Granuloma, which was removed. My right eye is stable and doing well with no eye drops except for Systane dry eye drops. I did require a YAG Capsulotomy in 2017.
I would like to thank Glaucoma Australia for giving so much information to all those with Glaucoma. I was able to contact the Australian & New Zealand Registry of Advanced Glaucoma and have genetic testing, along with my mother and sister who had also developed glaucoma: the results showing that my sister and I both have two detected gene changes in our CYP1B1. This means my parents have one gene each. It is interesting to note that my sister carried the same genes but did not develop glaucoma until age 45. My mother in her late 50’s and my father not at all.
At the time of this update my daughters do not have glaucoma but are tested yearly. I am a strong advocate of regular eye testing and Glaucoma Australia promotes that message so well.
Recently, I attended the “World Glaucoma Week”, first Congenital Glaucoma Support Meeting in Sydney. This was made possible by the wonderful team at Glaucoma Australia. I cannot express how much this meant to me, finally meeting the GA staff, the wonderful speakers of ANZRAG and most importantly the congenital glaucoma patients and families. In all my 61 years with CG I had never met anyone. My first meeting with a young mother and child of 2 years will stay with me forever, I was overcome with emotion and it reminded me so much of my mother and I taking this journey together. I was able to meet some other inspiring young people who have the right attitude to their ‘Glaucoma journey”. The importance of this meeting was of great significance and through Glaucoma Australia giving us a ‘voice’ we were able to share our lives, emotions and be inspired by each other. My wish came true. I now have lifelong friends whom I can share the rest of my journey with. Following the meeting, I reflected with my sister the significance of that first meeting and for two day after, I was still very emotional. Thank you, Glaucoma Australia for arranging the meeting and for giving us a ‘voice”. Glaucoma is not only clinical, but is emotional and financially difficult at times and I am so pleased to hear that all of these other areas are going to be discussed for the future generations. It is nice to know that a support network is growing stronger everyday.
I have had a very long and sometimes exhausting journey with Congenital Glaucoma. However, with strength, perseverance, expertise and the knowledge of those amazing Doctors who have cared for me, and incredible family support, I have been able to enjoy life and participate in many activities. I do not look at my Glaucoma as a disability even though this has been asked of me many times, its just a part of me. With continued technological advances, I hope to be able to see for the remaining years of my life.
Living with Glaucoma has made me strong and independent. There are difficult times but life is what you make of it and for me that is to take control of “My Glaucoma”, to deal with it when and if it misbehaves. Knowledge is everything, keep informed. Stay strong, be brave. I hope my story helps everyone, especially those young families experiencing their journey, I am living proof that you can get through this together if you just stay strong.
“Our baby, Sian, was born with congenital glaucoma. We have two other children and a large family – help families like ours to ‘Have the Conversation’.” - Megan and Frank
Frank heard about Glaucoma Australia and he contacted us to learn all he could about glaucoma, including if other members of his family were at risk of developing the disease.
Glaucoma Australia provided information and sent resources to help Megan and Frank ‘Have the Conversation’. They have two other children and a large extended family so they decided to host a B.I.G Breakfast at home as the best way to tell their relatives about glaucoma and the need for regular optic nerve checks.
All family members of a person with glaucoma have an increased risk, especially the direct relatives who have the highest chance (almost one in four) of developing glaucoma. That is why it is so important for close relatives to have regular optic nerve checks as part of a comprehensive eye test.
“We were so unprepared for the years of treatment and operations ahead for our daughter – we are grateful for the support of Glaucoma Australia.”
Help Glaucoma Australia continue its work with families like Sian’s.
Tony has been volunteering for Glaucoma Australia since 2002. After retiring from his busy job as a Warehouse Manager, Tony was looking to continue to be productive while at the same time wanting to help out in his community. Due to a family history of Glaucoma, his GP had recommended that he have an optic nerve check, this led to Tony’s diagnosis of glaucoma. He thought that Glaucoma Australia would be an ideal place for him to learn more about his condition and to help with the Association’s Mission: To eliminate glaucoma blindness.
Tony has always helped out with packaging and parceling and for many years has ensured that educational material, merchandise and Christmas cards have reached their destinations in good order and on time.
Tony told us that he had lived with glaucoma since 1988 and said, “I have needed cataract surgery, two glaucoma laser surgery procedures and an emergency trabeculectomy. Glaucoma Australia has educated and encouraged me throughout the years and to leave a gift in my Will is how I have decided to help everyone beat invisible glaucoma!”
Tony is a Glaucoma Australia “Giver of Hope.” He knows that a gift in his Will, can help others see into the future.