Hi. I am only 23 years old. Just starting to build my own career. Still have a life waiting. Have a plans for my future. Draw the paths and lines up to where I can go and should go. Then, suddenly, lines became wavy, distorted and uneven. Life gets even harder than I ever known. Since the age of 7, I've been wearing thick glasses. starting with -4L and -6R. Imagine. As I grew older until my teenage years, my myopia degree got up, until -10 and now, it almost reaches -16.5. I am totally unaware of what will happen. All the optha told me, it's just that you have severe myopia, nothing else. And then, one time, Feb 2017, I started to see floaters, 3 or 4, I can still count them with my fingers, which began increasing, until I noticed that they are everywhere, dancing thru the lenses of my eyes. uncountable. And there are wavy lines. I set an appointment with optha and told me that I had pathological myopia. I am not aware of. A congenital disease which your eyeball grows longer causing your retina and macula stretch and may cause tear, bleed, etc, upto what extent. Still, UNKNOWN. NO Cure, No prevention. Just monitoring. Holding back my tears. I don't know what's gonna happen. It's just, I am still beginning to walk, like a baby, but this time, unsure if I can walk straight or like the lines I am seeing, distorted and uneven. But still, hoping that one day, there will be cure or prevention to stop the growth. Anyone, with the same case, please let's hold on to God. Anyone, who knows how to deal with this. kindly enlighten us. Anyone who's having a study about cure, My heart is with you, supporting you.
I'm only 23. Life has just began. But wait... - Macular Society
I'm only 23. Life has just began. But wait.. I'm seeing distortions.
Dear jjjeka,
Please call us on the Macular Society helpline.
Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes the lead counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each.
The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.
Kind regards,
I'm sorry to hear of this- do post on here as people will help if they can
Hi Rosalyn-helpline ,
I am in UAE. how can I connect with this hotline? Thank you for all your support
Hi jjjeka,
You can either contact us via:
00 44 1264 350559
Alternately, you could email us via:
help@macularsociety.org
If you are able to email us then I could send you links to our information on e.g. Myopic MD and floaters.
Kind regards,
I've had pathological myopia since I was a child too and I was diagnosed with macular degeneration in my mid 20s by which time my right eye had already lost some central vision. I was also told there was no treatment and no cure at the time and that's a horrible thing to have to deal with at any age, but I know that when your whole life is ahead of you it just seems wrong to have to think about the prospect of sight loss.
I have been lucky to maintain vision in my left eye until last year when I developed myopic CNV complete with distortions and wavy lines at the age of 57. I know the devastating blow you have just been dealt and at such a young age. All I can offer is a hug and the hope that the myopic changes can sometimes slow down without warning as they did for me.
When I started losing sight in my good eye just over a year ago I thought it was the end of the world but I was very quickly offered Lucentis injections which sound horrendous but all of the distortion went away and after just over a year of treatment my vision seems to be stabilising. I don't know how long it will last but try to take each day as it comes and hope for the best.
How long have you had these distortions? I do so hope you have managed to speak to the Macular Society Helpline; they are so wonderful. My heart goes out to you x
Hi kalahuchi ,
Thank you for sharing the path u've taken. I feel not alone thru you. 3 months ago, I am seeing just floaters, and now distortions. I am recommended to have lucentis injection, but seems difficult to have at least one, due to financial incapability.. I don't know what to do. I have no idea.
Hi, can I also ask some suggestions from you. what are the do's and don'ts that works for you in order to maintain your vision. Thank you so much.
You're certainly not alone and it is so sad that money is an issue when your sight is so precious. For me the Lucentis was only made available to us here in the UK free of charge for my condition the same year that I needed treatment so I'm incredibly lucky because I could never have afforded the injections if I'd had to pay for them myself. All I would say is that scarring occurs very quickly and if you are thinking of having the treatment then it's better to give it a try rather than to delay. Most people I know have needed several injections before things stabilise but the treatment itself isn't painful; it's just the thought of it that's scary.
I just try to eat plenty of fresh fruit and vegetables a day and get plenty of exercise so just a healthy lifestyle really but I think that what happens to our eyes is down more to the genes we inherit and to luck than anything else. The Lucentis did work miracles for me; my consultant told me I have gained five lines on the eye test chart since starting the treatment but I started the treatment a fortnight after the first wavy lines appeared and I think that the quick response by the medical staff is what made the most difference in my case.
Each time I go to clinic they tell me that this isn't a cure but I try to be positive about the future because who knows what treatments will be available in the future and each day that I can still see is another wonderful day x
Hi kalahuchi , I am glad that you had your injection the earliest. Mine, is stikk unsure. Thanks for this thought. Yea, I know that this is a genetical problem. a manufacturing defect, what they so called. I am also hoping that this will be cured in the near future. What about in your daily activities? My work is related with computers, and so I am worried that the exposure from this, will make the condition worse.
Hi jjjeka,
I work as a home tutor and travel to students' homes to teach them so do a lot of close work and need to drive too. Fortunately I'm able to cope at the moment but I have reduced my hours at work and the distance I travel. I try to work with books or computer screens for no longer than an hour at any one time and go for walks in between. In fact I do a lot of walking these days and spend a lot more of my leisure time doing activities outside rather than reading or sewing so that my eyes are less strained.
I have a screen fitted to my computer to reduce glare and that helps, and after a visit to my local Low Vision Centre I was advised to change my computer settings to have a black background and white wording and also to enlarge the font size, but I haven't changed them yet. I was also advised to always wear good quality wrap-around sunglasses and a hat with a brim while out in the sun to reduce the risk of further damage to my eyes and I now have a lovely collection of very stylish hats which I wear with pride!
I can see you've had some wonderful replies to your posts; this is such a wonderful community and you'll get so much support and lots of good ideas from the people on this forum x
Hi I'm so sorry to hear about all you are going through. I do not have the same condition that you have but we have some of the same characteristics. I have Angioid Streaks. I was born with it but I did not begin to have hemorrhages until about 4 years ago. I have now had 6 and I have injection in both eyes every 6 weeks. I have distortion like you are talking about. I'm not sure if this is effecting both of your eyes right now? But my left eye is like looking at warps Swiss cheese. My right eye is getting worse. It does give me headaches and balance is hard sometimes. I am an artist and this has been quite devastating to loose a bit more sight with each hemorrhage. But, I continue to learn and work. There are new treatment and apps and AI stuff. I have just started using and app that is free. It is called SEEINGAI. It does all sorts of cool things. It is difficult and I know how you are feeling. First you need to know that what you are feeling is so normal. I know I have been going through this 4 years now and I still break into tears. It is like something is trying to steal your life. It's not stealing it, but it will be different. I have to think outside the box. The warps make me feel like I can't trust my depth perception, but I have amazing friends and family that are walking though this with me. Reach out to people who are emotionally safe. Share your heart,,, You are not alone. Do you have a great Dr? Maybe your Dr. can recommend some organization that may be able to help finance your injections. Hope you are doing a bit better since you wrote this. I have just signed up. I have been looking for support myself.
Hi jjjeka. Am sharing my story. hope that helps. I am from Mumbai, India. Am 37 years old. Had been diagnosed with high Myopia when I was 5 years old. As I grew older and older, the nos kept increasing. Fortunately, for the last 10 - 12 years, the nos have stabilised. they are now -16R and -17L. Had consulted doctors for its treatment but, unfortunately, the laser option is ruled out due to high index. Doctors have advised to go for lens implant at a later age if I ever have to undergo a cataract surgery. Have been also advised to go for retina chk every six months. Right now, I use soft contact lenses with glasses for cylindrical no.
Growing up even I had the same concerns what you are going through right now. I was rejected for a job just bcoz of my high index. Even before getting married, only after assurance from my Optho, I went ahead with it. Life has been good so far. One advise, I can give u is, dont let this impact you. One thing I have observed in me is that it has only added to my will power for I have developed the ability to see positive despite lots of negativity being around.
Few thins I do for my eyes - Walking barefeet on grass early morning, some yoga exercises for the eyes and taking less stress. I avoid thinking too much about it and believe in taking life as it comes.
Hope that helps. Let me know if u need any further guidance. Feels good to see a group for high myopiites 
What a wonderful, positive outlook you have and what an inspiration to us all x
Thanks for your comment Kalahuchi. Would be glad if I can make a difference.
Hi trips11 , I am glad that my post was noticed by the people with the same issue. How are you now? How's the back part of your eyes? Mine has issues. I have blood in my right eye which needs injection (high cost that I can't afford). How about you? Im hoping too, that my eye growth and myopia degree will stabilize like yours. Can you share me your yoga exercise? Might help. Thank you.
Hi jjjeka. Back part of the eye is good. I do go for retina chk ups and it has been fine. Am sorry to know abt your right eye but am sure something positive will work out.. My docs always told me that the no stabilises after a certain age and it did. Palming and walking on grass in the morning dew has been very useful. Also am sharing a link. But suggest you should consult your optho before you start them :
The doctor said, avoid your carrying heavy loads and running, and avoid fast movements since the eyes are sensitive. The retina and macula are so thin that it may be stretched.
Hmm. have also been advised to avoid adventure sports and doing exercises with head down.
I haven't been told that so thank you for the advice. I wouldn't do adventure sports anyway, but I do go to the gym and will take more care to avoid certain exercises now that I know x
That sounds like very good advice to me and fortunately I prefer long walks to running. I think it's just a matter of being aware of the activities that put our eyes under a lot of strain and keeping them to a minimum. For a lot of people these changes happen quite slowly and that is good because it gives us time to adapt x
thanks trips11 , you are lucky. please always take care of your eyes. Thank you for all your insights
Hi Jjjeka
So sorry about your situation but be consoled that you are in my prayers for strength and a solution.
prayers
Hi jjjeka
I have a condition different to yours but which responded to anti-VEGF injections such as Lucentis. Lucentis is very expensive but there is a similar and much cheaper drug Avastin which it is worth you asking if it could be suitable. If Avastin is administered from a bulk pack ie one which is supplied for general anti-cancer use it can be split into 100 tiny doses vastly reducing the unit cost of a single injection.
One other drug you could ask about is Ozurdex which is a steroid capsule implanted into the eye. It has similar benefits to the anti- VEGF compounds for my condition although it might not be suitable in your case. No harm in asking though.
Hi REnnatk, thank you so much for all these info. However, avastin is not available in the country where I reside in. I need to check also with my optha, if there's other option. Thank you. I hope your doing all well. Godbless
Hi jjjeka That is surprising and most unfortunate because Avastin is made by the same drugs company. It sounds as if they are witholding the cheaper drug to make more profit from the more expensive one and are using the argument that it has not been trialled for your condition. However, there is massive worldwide evidence that Avastin is effective off-licence for a range of eye conditions.
Hi Hidden , I will check if the hospital I'm into could prescribe me the said mediaction. Im hoping so. Thank you.
Hi I have just been diagnosed with myopic degeneration at only 24. I have to go for Avastin injections as they seen in oct that I have build up of fluid under retina. Did you go for injections and did they help?
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