What is Phthisis bulbi?

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.

A photo of Holly wearing sunglasses

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.

A photo of Holly wearing sunglasses with boats and the sea in the background

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

8 Comments

  1. Juliet
    March 8, 2018 / 11:02 am

    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 💕💕💕

    • lifeofablindgirl@gmail.com
      Author
      March 8, 2018 / 12:09 pm

      Thank you so much! You are the best, couldn’t do it without you both 💕💕💕

  2. March 8, 2018 / 1:54 pm

    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

    • lifeofablindgirl@gmail.com
      Author
      March 9, 2018 / 10:53 am

      Thank you lovely! Thank you so much, that means the world! So can you xxx

  3. April 7, 2018 / 4:43 pm

    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

    • lifeofablindgirl@gmail.com
      Author
      April 7, 2018 / 11:26 pm

      Thank you! Yes I agree, people need to understand the spectrum of sight loss

  4. barbara
    June 29, 2018 / 3:21 pm

    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!

    • lifeofablindgirl@gmail.com
      Author
      June 29, 2018 / 3:34 pm

      Ahh I’m so glad, thank you! Yes same here

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.