25-year-old diagnosed with early POAG

[Zerper_Woo]

I'm very depressed about this and confused about the future, I'm so young, I don't know how long my light will last, I'm currently using eye drops provided by the doctor, I'm scared, I'm terrified, what should I do?

[stephanie1977]

Hi Zerper_Woo,First of all don't panic! Everyone feels very bad about receiving a glaucoma diagnosis and are fearful and overwhelmed. Joining this wonderful support group is the start of a lot of support and calming information. You will see it will get better. Seeing that your Dr put you on drops is a good sign that it probably has been caught early. Be very diligent with your medication and find a glaucoma specialist ( if you haven't already) that is personable and listens to you and will accompany you on this journey . For me having confidence in my care is the most important aspect in managing my glaucoma. There are a lot of kind people here so ask anything and let us all help you! Warm wishes!!!!!

[KBIOW in reply to stephanie1977]

Hello,

I have a quick question, I too am petrified of my current situation… I am in the system and taking drops and tablets and some days are better than others. I am trying to be positive but some days you just don’t quite feel like it.

Can I ask how you find a specialist, where do you look if you have never had any experience of this and neither has anyone else you know. I am being referred to the ‘Specialist’ in my area who works for the NHS and privately and I am now waiting to hear back… I will keep pushing for feedback but how do we know these are the best for us?

Thank you

[Zerper_Woo in reply to stephanie1977]

Thank you for your reply. Your opinion is very important to me. I have found a doctor and adjusted my medication and life according to his instructions. I hope my condition can be controlled. I was so afraid of losing my light, more than my life.

[KBIOW]

Hello, I have recently joined this forum and I too am quite scared about it all, I think when it’s something we have no experience of it’s really hard to get your head around.

I have to say this forum has been really helpful, everyone is helpful and friendly and covers lots of topics and also talking to Glaucoma helpline I have found very helpful.

I think we have to try and stay as positive as we can, which is sometimes a bit tricky.

Take care

[Zerper_Woo in reply to KBIOW]

Thank you for your opinion. A good attitude may be good for the condition. I will try to maintain a happy mood, although it is difficult to do so now.

[KBIOW in reply to Zerper_Woo]

I agreed I find it really hard too.

Each morning I tell myself to be positive… sometimes I am and other days not so,if I am honest more days I’m less so… so we are all here together.

[callie77]

I agree with KBIOW its hard to stay positive when dealing with glaucoma.I describe it as a rollercoaster ride and it is very scary.

I find talking with others on this site helps me because there is always someone who has been through it.

Just to let you know that you are not alone.

Take care, we are here for each other.

[Zerper_Woo in reply to callie77]

Thank you for the warmth your reply brings to me.

[Littletreasures]

Hi Zerper_Woo I am sorry that you have had this diagnosis at such a young age and understand why you are feeling depressed. It will have come as quite a shock. It may help to know that most people with glaucoma do not go blind and that there are treatments to slow progression which you have started. There are new developments all the time in medicine and there is research into possible new treatments for glaucoma which give me hope for the future but for now focus on keeping taking the drops and going to your appointments.

[Zerper_Woo in reply to Littletreasures]

Thank you for your comfort. Let us look forward to future medicine and technology that can cure this disease. Save yourself, your family, and society from being dragged down. At the same time, I hope that I am a contributor to society, not a drag.

[Peg99]

Hello Zerper_Woo

Firstly, I am sorry to be so late in posting a reply to your Post. I was in the exact same position as you so I thought it worth posting despite the lateness of it.

I was 28 when I was diagnosed with POAG and after a lot of umming and ahhing, during which time my optic disc continued to be damaged, they decided that I had Normal Tension glaucoma. Drops were not sufficient to lower my eye pressures far enough so I had trabeculectomies in both eyes and then I was put on 3 types of drops and Diamox capsules to keep the eye pressures very low. That is more or less how the meds have stayed and I am now 66.

Like you, I was scared to death when I was first diagnosed. Not helped by people who said that their 'granny' had gone blind with glaucoma (folk can be so insensitive).

Unfortunately, I was so late being diagnosed that I had already lost 95% of my eye sight and the Drs reckoned that I would lose the rest in 5 years. I was 30 by this time and I was devastated. Back then, the Drs weren't much help in suggesting lifestyle changes that might help and it was the IGA (as it was then, now Glaucoma UK) who helped most. I raised the head of my bed, protected my eyes from the wind, drank only one cup of coffee a day, was rigid in the administration of my drops didn't do any strenuous bending/lifting, kept my head above the level of my heart and tried not to get worked up about it all.

But time is a wonderful thing. Not only did different types of drops become available, I found some good and kind (private) Consultants who took very good care of me over the years. Five years came and went and my sight had not deteriorated and then 10 years and here I am 38 years later and counting, and my glaucoma has been stable all that time. I still have the same amount of eyesight as I did once they started the right treatment and I no longer worry about going blind before I die.

In time, you too will accept that your glaucoma is just something to live with. Taking drops, which is probably a bit of a thing for you right now, will become second nature and as long as you always take all your meds as instructed, there is every expectation that your eyesight will not get any less than it is now because of your glaucoma. Drops and the various interventions they have make glaucoma manageable and keeps the condition stable. If that is achieved, your sight should stay as it is.

I remember feeling vey alone once the Drs tell you that you will not be seen for another 6 or 12 months. I was afraid of what could happen in that time. I managed to find a local Optician (one who is not part of a chain like specsavers) and they agreed to see me and take my eye pressures for me every month. They were also brilliant at answering any questions I had and I would have been lost without them. I don't know your circumstances but if you can afford it, you might like to explore this option for yourself; at least until you're happier in yourself about having glaucoma.

There is hope for the future Zerper_Woo, more than hope really. As another poster said, very few people go blind with glaucoma these days. There are so many drops and more in the pipeline all the time and that is before you get on to the various treatments available. It is natural to worry, we all do, but there are many things that are far worse and more life changing. Read all you can about glaucoma, do what you need to do to let you feel in control of it and remember that there is a helpline with Glaucoma UK where you can get loads of helpful advice adn information, not to mention this Forum which is full of helpful and friendly folk in the same boat as you.

Good Luck and don't worry. Take control.

[Zerper_Woo in reply to Peg99]

Thank you for your reply, sorry about your condition, hope all is well.

Your experience gave me strength to know that I should face the disease calmly, learn to get along with him, and try to control the disease so that it does not affect my life, whether it is physical or psychological.

When I was diagnosed, I thought about giving up everything about myself, because I didn't want to drag down my lover, family and friends, and even thought about giving up my life (on the day I lost my light). Perhaps, I should accept my imperfections calmly, and live a normal life, marry a wife, have children, work, live, and fully enjoy the beauty of life.

I hope to stabilize my condition with the help of a professional doctor. I am still very young, and I hope that the remaining decades of my life will still be bright. At the same time, I am a deep myopia patient-16.50D. I have struggled with the disease for more than 20 years. This year, because of POAG, I feel deeply sad. Desperate, I hope the worst never happens.

I yearn for the light and fear the dark.