I recently wrote a post all about my eye condition, Retinopathy of Prematurity (ROP) which you can read here. In that post I mentioned that I have a detached retina in my left eye which means that it is non-functioning. When I was a baby, I had surgery to try to stop the retina from detaching but it was unsuccessful. This caused scarring which has now affected my left eye.
I wanted to talk to you about Phthisis bulbi as this is something that I have been diagnosed with, due to scarring and chronic inflammation.
When I was researching Phthisis bulbi I couldn’t find many resources online, so I thought that I would create something myself in the hope that it might help some of you in the future.
So what is Phthisis bulbi?
Phthisis bulbi, also referred to as end-stage eye, is an ocular condition that often leads to scarring, inflammation and globe disorganisation, the eyeball can sometimes look collapsed. In terms of eye health, Phthisis bulbi is considered the last stage, therefore meaning that an eye is non-functioning. Phthisis bulbi is a degenerative condition so symptoms may get worse over time.
Symptoms may include:
- Blurry or cloudy vision
- Floaters (dark spots that float across your eyes)
- Light sensitivity
- Pain
- Redness
- Swelling
- Tenderness around the eye
- Visual loss
Phthisis bulbi may also result in your eye globe shrinking in size. The white part of the eye (sclera) may thicken; it may also become so thick that it creates a folding effect on the eye.
Causes of phthisis bulbi
Causes may include:
- Infections – untreated infections can lead to eye damage
- Retinal detachment
- Complications from surgery
- Long-term inflammation (also called Uveitis)
- Persistent hyperplastic primary vitreous, also known as PHPV, this is a genetic condition that’s present at birth. Babies born with PHPV have an eye that is out of shape; this usually occurs between weeks 7 and 20 of gestation.
- Retinoblastoma. This condition refers to a mass that accumulates and calcifies on the eye. Eventually, the calcification can form a tumour-like entity. It is most common in children, and is curable. However, treatment is required for full recovery.
- Trauma to the eye
So how does Phthisis bulbi affect me?
For as long as I can remember, I had never had any problems with my eyes other than Retinopathy of Prematurity and my condition had always been stable. However in June 2016, I started to become really sensitive to light (especially the sun), my non-functioning eye was also very swollen and looked very red, I also couldn’t open it properly and also felt very uncomfortable. It all happened so quickly, I’m not going to lie, it was quite scary.
Those symptoms continued for a couple of weeks so I thought it was best to contact my eye Consultant and he said that I needed an appointment as soon as possible. I went to see him and he said that it was likely to be an allergic reaction such as hay fever, so told me to get some tablets and also gave me some drops.
These didn’t work and my symptoms started to get worse, I then went back and was proscribed some lubricant eye drops which didn’t work either. After going back to the hospital several times, I was eventually referred to a corneal specialist.
The corneal specialist proscribed me some steroid drops which I had to take 4 times a day. I went back to see him a month later as there hadn’t been any improvement. That is when he diagnosed me with Phthisis bulbi, I asked how I’d developed the condition and he said that it had occurred due to scarring from operations when I was a baby and I also had chronic inflammation (Uveitis).
He told me that I would need to have a steroid injection which would be an operation to try and reduce the chronic inflammation which would hopefully relieve the discomfort that I was having. It had got to the point where all I wanted to do was poke my eyes out (dramatic I know, but it’s the truth). I had to have steroid drops every two hours along with some other drops various times a day until I had had the operation.
I finally had the operation in January 2017, and had to continue with the steroid drops 4 times a day and the other drops as well.
It wasn’t exactly ideal, as I was in my final semester of my third and final year of university so missing lectures to recover from my operation wasn’t something that I wanted to do, and I didn’t want to get behind on the work either.
The steroid injection helped the symptoms for a few months, but my symptoms started to flare up again. This resulted in me having to have the same steroid injection operation again in August 2017. Luckily, it has helped but I know that I may have to have it again in the future.
However, Phthisis bulbi still regularly affects me. My eye can often be red and swollen, feel very uncomfortable and it can often look a bit shut because of this. My symptoms can vary day to day, so I never really know what to expect. When it is very sunny I have light sensitivity in my right eye which makes my non-functioning eye feel very sensitive and uncomfortable, this is because of Phthisis bulbi. When out in the sun, I have to wear sunglasses which is something that I didn’t used to have to do.
My eyes also seem to become dry very easily, so when I am on the computer for long periods of time, I often have to take regular breaks to stop this from happening as this can irritate my eyes if I am looking at the screen for a long time. I also find that being out in the fresh air also reduces my symptoms which is always good.
I am still on steroid drops, and 3 other types of drops as well to try and keep my symptoms under control. I definitely feel that the condition is easier to manage than it was when I was first diagnosed so I’m hoping that it stays that way.
So there we have it, my post on Phthisis bulbi. I hope you have enjoyed reading and that it has been of use to some of you.
If you have any questions then leave them in the comments or feel free to contact me.
Holly x
![Not only did I attend the 7 goal thriller between @arsenalwfc and @manutdwomen on the final day of the 2024/25 @barclayswsl season over the weekend, I was also provided with the most amazing audio descriptive commentary.
It’s no secret my love of Manchester United. I’m going to make it known now that I have a pretty big soft spot for Arsenal too.
Many of the Arsenal team are some of my favourites. It’s also clear that the club care about accessibility and inclusion for disabled supporters, something that’s extremely important to me.
And their commitment to accessibility was clear from the call I made to book tickets, right through to the match itself.
But the audio descriptive commentary scored an extra goal or two for me. Audio descriptive commentary is a rarity in the women’s game. It’s something I’ve been desperate to experience for the last few years. Now that I’ve had that experience, I can wholeheartedly say that it completely transforms the experience of the match as a blind fan. I don’t have the words to explain the feeling of inclusion it gave me.
I tried to sum it up, documenting my experience of the match over on the blog. If you’d like to give it a read, head over to lifeofablindgirl.com – a link to my blog is also in my bio.
Thanks to an epic game on the pitch and the accessibility off it, the Arsenal versus United match is by far my favourite game I’ve ever attended. I hope to be returning to the Emirates soon!
@arsenal @manchesterunited @alanmarchsport
[Image descriptions:
Image 1: Holly stood in the Emirates Stadium with a view of the pitch behind her. She’s wearing a light blue denim jacket and is smiling at the camera.
Image 2: A Manchester United player running towards the Arsenal goal in the semicircle of the penalty area. Arsenal players can be seen positioned around her.
Image 3: Two Arsenal players hugging each other after celebrating a goal. Other Arsenal players can be seen running towards them to join in the celebrations, whilst Manchester United players are walking away. The Arsenal players are wearing their red home shirts, and the Manchester United players are wearing their blue away shirts.]](https://lifeofablindgirl.com/wp-content/plugins/instagram-feed/img/placeholder.png)
Yet again you have put into words how much you have come to be where you are now and you feeling and how though all of this you have never once complained you are one very very special person and
Your mum and dad are so proud ???
Thank you so much! You are the best, couldn’t do it without you both ???
Another really interesting and informative post Hols. I’m sure it will help a lot of people as your posts always do. I know how hard it can be for you at times but you have grown to be such a strong person and you can conquer anything that life throws at you, you’ve proved that in the last couple of years xxx
Thank you lovely! Thank you so much, that means the world! So can you xxx
Very informative. It is important that we can fully understand your condition and what causes it. Too many people are misinformed and think you can either see or you are blind, and nowhere inbetween
Thank you! Yes I agree, people need to understand the spectrum of sight loss
Holly You have been most helpful. I am suffering much the same as you and know now that I am not the only one! All this sunshine is lovely but playing havoc with my eye!
Ahh I’m so glad, thank you! Yes same here
What a great article. I’m currently struggling with uveitis and started the Durezol (steroid drops) 4 times a day after dealing with the symptoms for a long time. Currently doing testing with my pcp to figure out where the inflammation is coming from (autoimmune issue?) was there any medication you took to suppress the inflammation in your body besides eye drops? Do you remember what the injection procedure was called?
Thank you. No I haven’t taken anything other than eye drops, I can’t remember sorry but it was some form of steroid injection. Fingers crossed for you
By reading your article, I have gained some comfort with my daughter’s situation.
My husband and I stumbled across your blog when googling PHPV and phthisis bulbi when it was determined that my 14 month old daughter’s eye with PHPV has now phthisis bulbi.
You have described a similar scenario and we have sought comfort in what you have written. We thank you for this.
This article was written over two years ago, is it possible I could ask a few questions? As you can imagine in someone so young who is not yet able to verbally communicate, I just want to make her as comfortable as possible.
I hope to her from you,
Tuneil
Thank you so much, that means a lot. Of course!
I’m so glad I came across your page. I am 33, I had an accident where I was stabbed through my left eye with a knife age 11. I had a total of 13 operations due to complications from my initial accident. Mostly retinal detachment corrections. I now have heavy oil in place within my eye keeping the retina flat. It has been stable for a number of years, however, two days ago I received the news I’d always dreaded- I was no longer in a stable so condition and I have been diagnosed with Phthisis bulbi.
My left eye has shrunk very slightly in comparison, it’s difficult to tell when this happened. Certainly over the years. It is no more irritable than usual as it always has been slightly red and inflamed yet has always remained comfortable. I have so many questions, do you know how long can this condition take to worsen? Is it different on each case or generally speaking is there an average deterioration?
I have an increased dose of steroids to take as well as other drops. I’ve been told in 5-10 or 20 years I could lose my eye completely. I don’t know what to think or who I can ask that has any experience with this. I feel lost and upset and I’ve been told there is nothing else that can be done to help. Any further advice you could give me would be appreciated so much. Could you tell me what the steroid injections do for you?
PS thank you for making this page and bringing so comfort and answers to people who are desperately searching for them when feeling hopeless.
I’m so sorry to hear that, it sounds like you are going through a difficult time at the moment. Please remember that there’s lots of support out there, especially from the vision impairment community, as well as organisations and charities in your area.
I’m certainly no expert, but as far as I am aware, or from what I have been told in my own case, it depends from person to person.
For me, the steroid injections took the inflammation down for a little while, but it wasn’t a long-term solution and haven’t helped since writing this post. I’d recommend speaking to your consultant and seeing if they can answer your questions, often they can help you determine next steps
Hi Holly,
Thank you so much for your article. I came across it trying to research about this condition because my Mom had a cataract surgery a month ago which had a bad complication of choroidal hemorrhage and retinal detachment, so now she is permanently blind in her right eye. The doctor said most likely this will lead to Phthisis bulbi. But I don’t know how long that will take. She is taking steroid drops but the problem is that she is allergic to steroid drops. The drops make her feel very sick. But It seems thats the only way to help with the pain in her eye though. So we are considering taking her current eye out and putting in a prosthetic. Her doctor said that could be an option. Have you done that, or thought about it? I wonder what complications could come from putting a prosthetic eye in. If that also would be painful or if that would relieve the pain.
I’m really sorry to hear that your mum had complications after surgery.
Yes, it’s an option that I have looked into and something that I’m considering for the future. I’d recommend that your mum speaks to her consultant about this as they will be able to provide more detail or give her any information
I also have phthisis bulbi in my right eye due to a complicated retinal detachment and several procedures and surgeries in 2005. I guess it became noticeable a couple years ago. I’m blind in the eye, and deal with some pain and changes in the appearance of the eye. My doctor is monitoring that right now.
Wishing you the best of luck with it all.