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March 2020

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.

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...