New diagnosis Myopic degeneration - Macular Society

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New diagnosis Myopic degeneration

Sept73 profile image

Hi I am new here.

Yesterday I was diagnosed with myopic degeneration. My left eye is -21! My right eye has cornea hazyness from laser correction surgery 24 years ago and consultant said I also have scarring behind the eye that is impairing my vision.

I am 47 years old, married with 3 children the youngest only being 7 and I am absolutely devastated and terrified I will go blind and be a burden to my husband as I now cannot drive. I want to enjoy my life with my family. I cannot eat or sleep with anxiety 😢

18 Replies

I’m so sorry to hear what you’re going through. Try not to overthink the future, avoid Googling for answers and just await more information from your specialist.

Your husband and family love you and will support you, you are not a burden! Families pull together and find new ways to work. Friends will be helpful too and other mums are always great at helping out with lifts to activities etc. You have a lovely life ahead, keep positive and remember how loved you are xxxxx

Sept73 profile image
Sept73 in reply to CSRScotland

Thank you for your reply. Yes I am the worst at Googling😐. Xx

I can hear your devastation and can understand it somewhat I was also around the same age with the same diagnosis. It is challenging and frightening but please please use all the support you can that is on offer. I have a podcast generally my experience with disease you may find it helpful it’s humorous

anchor.fm/marci66/episodes/...

This is the latest episode it’s also available on Spotify and Apple.

I wish I was here to reach out to you and help you. Just take each day at a time just take this day do what you can and you will find new ways of coping I promise!

Sept73 profile image
Sept73 in reply to Purplemarcin

Thank you for you kind words. I will take a look at your podcast x

Sorry the podcast is called insensitive by Marci if you need to search for it.

Hi Sept73

Firstly, a big virtual hug to you because this is a horrible shock.

I was diagnosed with MMD in May this year. I'm 53 with three kids, youngest is 17. I felt it was unfair too and imagined the worst outcome for myself and family.

I went into overdrive, researching alternative treatment, and health supplements: one capsule of lutein, meso-zeaxanthin and zeaxanthin; cold liver oil, and 200mg of CoQ10.

What is impossible in the beginning is to relax. I am learning that this is the most important thing to do. Eat well, sleep well, take daily exercise, and enjoy simple pleasures. Being in nature is so rewarding, even in the city!

So, I'm four months into this - I sometimes have to remind myself that I have this condition - to look at a straight edge of a picture frame to check for waves, or look at the Amsler grid in the kitchen. I even forget to take my supplements.

I do get out in the fresh air, drink lots of water, use a good quality eye drop to hydrate my eyes morning and night (research dry eyes and MMD - it's a chicken and the egg scenario).

I have had 2 Eyelea injections which have so far, not only stabilised, but improved my vision. I am fairly squeamish, but I found it less awful than I imagined.

Talk to family and friends about your diagnosis - a problem shared...

Use this blog - I found it a godsend.

And remember, the future can still be rosy!

Take care, stay in touch.

BGS

Sorry - just to clarify: the supplements I take are ones I have chosen to take through my own research - it's not an official recommendation, though many people take lutein and zeaxanthin in branded eye health supplements such as iCaps available in Boots, etc.

I also take a daily probiotic as good gut health is supportive overall to the body.

CoQ10 helps with oxygenation. Supposedly, helps maintain a healthier retina. It can be expensive - I chose not to purchase the body-ready CoQ10 because I read that your body easily converts it anyway. (This will makd more sense if you read around this.)

Anyway! If you in the UK, the most valuable thing you can do is to go outside with your young family and enjoy this gorgeous sunny day!

BGS xxxx

Sept73 profile image
Sept73 in reply to Bluegreensea

Thank you. I love walking. No one has mentioned injections as yet, but I will do anything to help. Xx

In his YouTube series "The Blind Life, " Sam reviews and recommends the newest technology for the visually impaired. While you may not need them now, it may comforting for you to learn about the aids that can enable you to maintain your independence

Sept73 profile image
Sept73 in reply to

Thank you xx

eyesright profile image
eyesright in reply to

Oh yes! He's brilliant. His vids really helped me find techy kit to get a demo on for my hubby to try and we ended up buying one of the items :)

Sending you a hug X diagnosis is hard and sight probs are known to be akin to bereavement so be kind to yourself.

I cried myself to sleep every night the first 2 weeks but 6 years on I'm still working and driving and enjoying life. The future isn't as bleak as it feels right now x

Sept73 profile image
Sept73 in reply to eyesright

Thank you that's good to hear. Xx

menopause connection???????

Hugs as well to you, the first weeks of knowing were scary for me as well but like others have said, the fear of it all does settle down and you find yourself adapting like you have been doing already before your diagnosis.

Mine started at a similar age as well and female. I have wondered over the years as to wether pre menopausal changes (we all know what it can do to the skin...what if the tissues that keep the eye shape stable also weaken?) are also are responsible for the gradual elongation of the eyeball and then the Myopic status moves to MMD in some cases. I am fine, my life is good, adjusting........but I do wish now I had started on HRT at a medically early age as a preventative. Just in case. I never did.

A consultant I spoke to on a Macular Society Zoom for this condition, said that he had never considered it as relevant but would start to look out to see if other women noticed a change at this time. So, if you are female with myopia and started to see a change in your prescription in pre menopause increasing in diopters year by year, then stabilising when through the menopause.....post here and lets see how many women have been affected in this way. If there are very many I will send the info along.

Yes! I have thought the same. I am sure I am menopausal, waiting for a gyno appointment. Thank you xx

I was way past menopause when diagnosed. Clinic was keeping an eye on me as my older brothers had it too (but not sisters!) and gave me an Amsler grid. So although we cannot think of any of the ancestors who had sight problems there may be a genetic link..

After 4 years of visiting the hospital I’d say most of the patients have been female. I suspect there may be an environmental component too as so many diseases and autoimmune problems are growing in numbers although may be because we’re simply living longer!

I suffering peri menopausal symptoms and had a particularly bad month just before my first occurrence of CSR. I definitely feel it’s related for me x

I dont know if my story will bring you comfort.I hope so.I am going blind with an inherited condition Although it is not macular degeneration the disease destroys the macula and the end result is the same.My grandmother was blind at 20 years old .She raised 5 children and lived a full life.She passed the condition to my mother .my mother was blind in her thirties with 6 children.At the time there was no treatment .She also had a happy and full life.She passed it to my brother and myself.Due to advancements in treatment my brother did not loose his sight until he was 57.I thought I had escaped the condition because i had no problems until my late 50s when it started .I have been treated now for ten years .My vision is not great .Ther are many things i can no longer do ,but thanks to progress being made every day i can still see.Take comfort in that that many scientists are working on new ways to save our sight .Trust your family.Let them be there for you as you would be for them.My thoughts are with you

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