I’ve realised I haven’t written much about the medical aspects of ichthyosis as much as the social impacts. Of course, I’ve written about the pain and being in hospital, but it’s never very technical. Maybe because it’s quite difficult to explain what pain feels like, or that there are some aspects of conditions that are best left unsaid because honestly, they are a bit gross and make me happy to live alone.
But tonight I find myself writing about the medical stuff. One of the medical impacts of ichthyosis I’m suffering from at the moment is very sore eyes. See, ichthyosis affects the eyes too. I’m not quite sure of the technical wording, but in basic terms, people with ichthyosis may find their eyes not closing fully, and excessive dryness of the eyes. It’s got to do with the lower lids – the medical term for this is ectropian – it means the lower eyelids sag and turn out, reducing the lubrication in the eyes. And so the eyes get dry, and gritty, and this may result in damage to the cornea. Reconstruction of the lower lids can be done via an operation.
In the two years that I’ve had this blog I’ve not really mentioned my eyes because they’ve been doing ok. I used to see the opthamologists regularly, but they were doing so well I no longer needed to see them unless an appointment was especially made. But since I’ve been on TV, I’ve noticed that I do blink a lot – unintentionally – and i guess this is to lubricate them. My eyes also run and I am constantly dabbing at them to remove excess tears and stringy bits.
When I was about 20, I was driving to work on a cloudy day. I had to pull over to the side of the road because my eyes were heavy and it felt like I had shampoo in them. The glare was too harsh for my eyes and I could barely keep them open. I remember working in the department store and just wanting to close my eyes. The next day Mum took me to the eye specialist and they told me that it is common for ichthyosis patients to experience problems with their eyes. They said my eyes were in good condition because I constantly moisturise my face with Vaseline and so the area around my eyes get moisturised too. And the opthamologists in Melbourne have said the same thing. I have a friend with ichthyosis who is now legally blind because of his ectropian eyelids.
I remember needing to go to the eye and ear hospital on the day Heath Ledger died, and I sat in the waiting room for hours waiting to see a specialist who gave me some drops. Since then, my eyes have been ok.
Until the past month or so when I’ve felt them deteriorate. My vision is fine. I can read from a distance, though I am not great with reading colour on colour – I think this is the combination of tears and Vaseline. But I now find the skin around my eyes is getting dryer, I’m getting more yellow build up inside them, and the sun really affects them, particularly when driving in the morning. You know when you go out on a sunny day and sneeze because the sun is bright, and when shampoo gets in your eyes. Well mine have felt like that. I guess I’ve not noticed much because I catch public transport to and from work. So on the days when I’ve driven to the post office before work, or going somewhere on the weekend, particularly straight after a shower, I’ve struggled to keep my eyes open. It is quite scary really. Yesterday morning I did not have sunglasses on me while out shopping, so I bought a pair and some eyedrops, which improved my eyes greatly.
I’m not sure of the steps from here. They’re not deteriorating enough to affect my vision, or for me to lose my independence yet. But I will be very vigilant in wearing sunglasses everywhere, not just when driving.
With this Christmas period approaching, I don’t think the opthamology clinic will be open, but I think it’s crucial for me to see a specialist this week. Perhaps another trip to the eye and ear hospital. Keep your fingers (and eyes) crossed for me.
I know mostly what to expect with the pain of ichthyosis. I can manage the day to day stuff. But it is the unknown that scares me a little. Especially not knowing how bad my eyes will get.
Carly,
You are such a brave and strong person. Living life to the full, no matter what.
SSG xxx
Oh Carly I am so sory to hear about what you have to go through with your eyes.
Fingers crossed you can see someone this week, they get better & you don't have to stress about them for a long long time. x
Oh goodness Carly! Reiterating as SSG says, you are brave and strong and I hope for a positive outcome from your doctors/optho visits. xxx
Wow that's really scarey. Is there anything they can do to help?
Good luck with seeing someone soon, Carly. More to deal with!! I hope the pain improves soon, lovely. You're such a trooper, so brave. It is scary!! Great job for having a plan to wear your glasses more. Hugs.
Heidi xo
thinking of you xxx
It never occured to me that Ichthyosis would affect the eyes. I'll admit I haven't googled or otherwise read up on the condition at all, I did know it affects the skin and is painful. I remember reading about it years ago when a newspaper/magazine article featured a baby born with this condition. So I've known about it, but that's all. Thinking back now, that baby I read about was probably you.
Anyway, what would be the problem with sunnies while driving? During the daytime at least. I see lots of women driving with sunnies on.
I'm glad that for now the eyedrops and sunnies are helpng, and hope that continues to help.
Thanks everyone for the wishes. You taking the time out to care and write to me means a lot. 🙂
There is no problems wearing sunnies while I am driving River. I should wear them more, and at times when I am not driving too.
I went to the hospital today – was given drops and gel and have to return Friday.
I used to use a contact lens system where you wear rigid contact lenses over night and they shape your eye so that you can see during the day. It is like non-permenant laser surgery and it was awesome. But overtime my eyes got more and more sensitive, I can definitely relate to the sun and sensitivity issue.
For me, the solution was simple, I stopped wearing the lenses. I wish there was such a simple solution for you.
But one thing I did learn in that period is that there is a wide range of different darknesses of sunglasses, so I always had a collection that would let me wear the right darkness for the particular day. Maybe some post-Christmas sales shopping is in order?
Hope you are feeling better today.
Hi Carly,
This is my first comment on your blog, I'm an optometrist from Melbourne so I felt obliged to comment on this! Even though I have not personally seen your eyes myself I thought I might add my completely unsolicited 2cents worth!
If you have an ectropion (loose lower eyelid that turns away from the eye ball) that can definitely cause something called exposure keratopathy and I have definitely seen this in quite a few people before. It is a condition that can definitely be managed. With an ectropion, your tears do not wash over the surface of the eye properly when you blink. Therefore, the surface of your eye can get very dry, so frequent use of drops/gel/ointment is necessary. By not managing the dry eye, the chronically compromised eye surface can possibly lead to infections (which are treatable but painful to endure!).
Now, regarding the light sensitivity particularly in the mornings (again without having seen your eyes myself), another problem with ectropions is that when you sleep, your eyes may not close completely, so part of your eyes may be exposed at night while you sleep leading you to wake up with really dry eyes. To try and get around this, I've told people to use thick eye ointments just before they go to bed, or in more serious causes, actually using surgical tape (hopefully you aren't allergic to it!) to physically stick the eyelids together.
Sometimes if the eyes do flare up really badly, a short term steroid drop may be needed to help calm things down.
The ophthalmologist has probably already told you a lot of this anyway, please continue to see them as they deem necessary and take care of your eyes! If you have any other questions I'm more than happy to try and help. All the best (and merry Christmas!),
Jessica
There are several ways how you can be fashionable on a budget. You don't need much. You just need to know how you can wear what you already have or when to get what you need.
This comment has been removed by a blog administrator.