Looking for support- Degenerative Myopia with CNV

[Lilsarah]

Hello all!

I am writing in hopes of finding support in this community as well as some hope. Given the fact that degenerative, severe myopia is so rare and individualized, I know none of us have all the answers.

To share my story: I am 28 years old and have had moderately low vision (severe myopia) my entire life.. -19 in both eyes at the moment. Thankfully can be corrected with glasses/contacts, but not to 20/20. I was diagnosed with degenerative myopia with CNV in March of 2018. Since then I’ve had 8 shots of Lucentis in my right eye and 3 shots in my left. The journey has been full of ups and downs so far.

At this point I am a bundle of fear, anxiety, and depression. I have a therapist and good support system, but ultimately I feel alone. It’s so very hard to look forward to the future not knowing what’s to come. Kids? Pregnancy? Work? Everything??? I have a wonderful boyfriend who is so supportive but I feel so guilty that he is stuck with me.

Anyone else close to my age/diagnosed at my age? It’s hard to wrap my head around the fact that I could lose my sight one day, it feels all consuming. Thank you for taking the time to read this far and I hope to hear from others soon!

[thom3patty]

🙏🏻❤️

[springcross]

Hi Lilsarah. I'm so sorry to hear about this. I can't help I'm afraid but I really hope you get some response from someone who can. Good luck to you. xx

[Nennyy]

Hello Lilsarah,

I was diagnosed with myopic CNV December 2021 at 28. It’s been quite a journey and i feel the same way you do. i have had 3 in shots in my left eye and 1 shot in the right eye so far.. The CNV started out in the right eye and I didn’t get treatment on time so vision in that eye is so bad now. The left eye is still quite manageable.

I am as scared and uncertain as you are, It’s quite a depressing journey but I have decided to live each day with positivity.

We will be fine…Sending you lots of hugs.

[Lilsarah in reply to Nennyy]

Hi there Nennyy 💜 thank you for your reply and support. Taking this day by day is all we can do I suppose! I have actually joined a wonderful group on Facebook since I posted this here called Myopic/Macular Degeneration Group Support. It’s been very helpful reading other’s experiences and I’ve even learned about new research the Macular Society is working on that has given me hope to cling onto. It might be helpful for you too if you don’t already know about it. I’ve even found others in our age group who are experiencing similar things.

Big hugs!

[Nennyy in reply to Lilsarah]

Hello Lilsarah

I have joined the Facebook group, I felt quite alone in this journey but it’s quite cool reading from people with same condition.

We’ll be fine

[StokeySue]

Hello Lilsarah

Unfortunately degenerative myopia is not in fact that rare, and it is getting more common. You are I think a little unlucky to develop CNV so young, though with myopia as high as -19 you are relatively high risk.

It is very difficult, I do have some understanding, I developed CNV in my R eye at 35, with a prescription of only -6.25. Thar was over 30 years ago when there was no treatment, and I was lucky (sort of) that my right eye waited until there was treatment available, over 20 years later, to develop CNV. The course is quite unpredictable,The support available depends on where you are, there are online groups such as the US based, but global, Myopic/Macular Degeneration Group Support on Facebook, and in the UK the Macular Society has counselling, advice and support; you will almost certainly have some kind of counselling available regionally and I'd recommend taking it, I din't and I should have

Best of luck

PS after 33 years of MMD I'm still typing this with eyes and hands, you don't tend to come to a complete halt

[Nennyy in reply to StokeySue]

Hello StokeySue,

Out of curiosity, What is your vision like now?

Especially in the eye that you first developed CNV when there was no treatments available,

I find this condition scary tbh

[StokeySue in reply to Nennyy]

I’m registered partially sighted, so visually disabled; I would have been made to stop driving about 7 years ago (but elected to stop sooner). The first R eye had a massive bleed initially and by the time I was seen 3 weeks later had formed a Forster Fuchs spot - a scar that removed central vision in that eye. That’s the bad news.

BUT I can close my better left eye and using one eye with peripheral vision only I don’t bump into the furniture. I use varifocal lenses for both eyes (not very strong as I have implanted lenses following cataract surgery). I’m m typing this on an ordinary iPad; I find reading print quite difficult, wouldn’t read a newspaper but read on the iPad, though I’m moving to audio for full-length books. And two weeks ago I spent a week in Glasgow alone, did the tourist things, was fine, I don’t think most people I encountered realised there was a problem, I don’t use a white cane. They may have thought I was having the odd senior moment (I’m 68)

[RosMacularSociety Partner]

Dear Lilsarah,

We have a Myopic Macular degeneration support group which you could join:

macularsociety.org/support/...

In addition, we have a Working Age and Young People's section (WAYP), which may be of support:

macularsociety.org/support/...

Please check our website for other information and support available:

macularsociety.org

Kind regards,

Macular Society Advice and Information Service

Email: [e-mail]

[Corriesboy]

Hi Lilsarah, I also have this condition diagnosed in 2017 in my left eye only at that time , I was in my early 50s but my world crumbled. I had never heard of CNV and more I read on internet the more scared of loosing my sight I became so that had to stop,

I joined the macula society and this forum and they were fantastic.

I work full time , have lots of animals , drive loads, infact I’m rarely in and I thought my world had crashed but infact it didn’t !

5 years later I’ve had 32 injections in my left eye , 6 in the right eye , hospital are great regular checks and I still do everything I did before I was diagnosed.

Keep positive and calm take each day as it comes , yes this is horrible your much younger than me so let’s hope they carry on with the research and get a cure in the future 🙏