Tuesday 31st July 2018

My name is Ali and I have blepharitis.  Nope, nor had I until March 2017, when after some years of what I believed were repeated eye infections, I was diagnosed with blepharitis. Some people say they have bleph – and maybe they do, but it is so mild, it is like what I have every (good) day.  Bleph is not tired eyes or hay fever.  A full-on bleph attack is just awful, sudden to arrive and slow to recede, debilitating and is not ‘normal’ itchy eyes that are a bit dry, reactive to pollen or whatever.  It causes great disfiguration, very pronounced redness of the whites of your eyes and major swelling of the eyelids. This can include ‘scaling’ of this skin, redness of the skin all round the eyes and bruise-like ‘stains’ of the eye sockets.  I still, even though mine is well controlled have a purple line above each upper eye-lash line.  It looks like faint eyeliner! If you thought purple eyeliner was cool, which it is not. FYI. This post is prompted by just wishing to share what I have learned about managing this condition.  I know all too well that there are many worse things to be dealing with, but blepharitis (bleph, to its friends) is really miserable and maybe what I have tried will help someone else. Bleph is an eye condition.  The term blepharitis can cover many variations.  Overall, bleph presents as red eyes, red eyelids, watering and itching in the eyes, sticky eyes/debris, and pain and swelling around the eyes, especially the eyelids. On and off, I had all these and more for several years.  I thought I had conjunctivitis, only over and over again.  The symptoms are often very similar.  The difference is that bleph will not usually respond to over the counter or prescription treatments for conjunctivitis.  Nor is it contagious. Finally in March 2017 I had a diagnosis.  But that was really it – I was told what it was, wrote the word down and went away to basically do my own research.  At that time, I had terrible discomfort and disfiguring symptoms in my eyes and I was told that my bleph was allergic blepharitis.  I now think that was partially correct but not entirely. I am very allergic to a lot of things, usually insect and plant-based such as wasp stings, spider bites, and touching plants – almost all plants, actually which is awkward as I love gardening.  I have had eczema all my life.  I am allergic to soil, bright sunlight, most detergents, many soaps and lotions, plastic, rubber, and many synthetic materials.  I am allergic to a fair number of animal and synthetic fibres (again with the awkward, being a knitter…) but not as an asthmatic would be, it just affects my skin.  My hands are in a permanent state of painful siege  and my skin is ultra-sensitive, so my eyes being allergic to all the above and more added up.  I am also sensitive to some foods (but not actually allergic).  Chiefly, this is sugar.  Especially refined sugar such as in a cake, but also the sugars from any carbs if I overdo it.  This reacts badly in my gut as well as on my skin.  Stay with this, because bleph and its successful management are very closely linked to diet. Since then, I have learned a lot about it. This is largely from on-line ‘communities’.  The best one in my view is a UK-based Face Book group founded by a man called Mario with a wealth of experience.  He started The Blepharitis Advice and Support Group because, like so many of us, he noticed how little knowledge there is about Bleph even amongst the medical professions.  Also Mario has successfully managed his bleph into submission and he wanted to share.  I am so glad he did.  Because when I found this group I was really struggling and did not know what to do, or who to ask for advice as I don’t know anyone else with blepharitis. Bleph is isolating and depressing. It makes you stay indoors.  It stops you (or it did me) reading, writing, and knitting as looking downwards hurt too much.  I read, write and knit for a living.  It makes you wear sunglasses all the time, mainly to hide the symptoms but also as it is soothing to have low light. It can make computer work very trying and finally, it robs you of sleep because when it is very active, it hurts to close your eyes. Some people have bleph as a result of dysfunction of the glands around the eyes.  Some people have it because of other skin conditions such as rosacea.  Which is a kissing-cousin with eczema.  Some people have it due to allergies.  Others because of an over-population of a mite called Demodex.  Demodex mites live on almost all of us, in the hair follicles.   Only c4% of humans do not have Demodex.  DO NOT GOOGLE IMAGE THIS.  Oh, OK, there you go, well, I did tell you not to! If they become epidemic, one symptom may be bleph.   Clue:  if your eyelashes often fall out, and/or grow sort of wonky, sideways, straight out or into each other, and may feel ‘sprained’ or tender at the roots, as mine did, this might be a Demodex sign. If you think you may have bleph, you need this confirmed by an eye specialist and this will not be a GP.  In my case it was just my optician. If you do see an eye specialist, be sure to ask – in the event of a possible bleph diagnosis – what kind you have:  allergic, gland-related, Demodex, etc.  They may not be able to tell you but it’s a start. Conventional treatments range from eye compresses to antibiotics and steroids.  I have never had antibiotics or steroids as my optician said they would be pointless, even though I actually begged. I treated mine as he suggested:  super-careful eye hygiene, very warm flannel compresses, no eye makeup, moisturising eye drops. If you wear contacts, add not using these to the basic list. I was not in the habit of neglecting my eyes, so they were clean.  But I did (do) love wearing makeup, and this had to stop.  I can now wear it, a bit, and as long as it is not for many consecutive days. This was my opening regime:  wash face as usual.  Apply very warm sterile flannels to closed eyes and press – keep this up with fresh hot water for as long as you can manage up to ten minutes.  This is believed to release clogged glands.  Clean eyelids and lash lines with Blephasol or Blephawipes.  I soaked a cotton bud in the Blephasol and gently ran it over the lash lines, using a firm downward motion.  Then preservative-free eye drops as dry eyes go with this whole deal.  Then moisturise the skin round your eyes as best you can.   This did work for me, kind of.  I had a very slow turnaround with an almost imperceptible reduction in symptoms over about six weeks.  By summer, it was 80% better and yet I had frequent flare-ups and was not able to reduce my regime which I had to do at least four times a day. In the meantime, I became depressed.  I know that may sound shallow as bleph is not cancer, no-one died of it.  But it gradually wore me down and made me sad and anxious.  I knew I was only just managing it and I just did not know how to make it better.  Further abject begging at the opticians failed.  So, as I said, I joined some on-line communites of bleph sufferers, and read all (I mean ALL) the stories, the tips, the treatments and most of all, the successes.  From this group I learned about the many types of bleph – and I began to try some of the things that others had success with.  I learned that I was over doing the hot compresses. I do still use this but rarely now.  I learned that I probably had both allergic bleph and Demodex related bleph and maybe also skin-condition related bleph – and now I think that these are all linked, in my case and probably in many cases. Just as an interesting aside, when I had Florence, I burst a small blood vessel in my right eye and for 20-odd years, I had a clearly visible red dot on the white of that eye.  It was stable, not changing and the optician was unconcerned, he just noted it.  One day, in 2017, after I had been hot-compressing for some weeks, I suddenly noticed that the dot had gone.  The frequent heat may have caused it to somehow be re-absorbed which is what Mario suggested.  Or it might be magic. It has never come back.  So, even bleph is not all bad… My diet was OK to begin with, in that I have avoided refined sugars for years due to its unfortunate impact on my tum.  That *may* be a euphemism. But I did eat vast amounts of fruit – maybe 5 – 7 units of fruit a day! That is way too much even if you do not have bleph, because it’s all fructose!  I also ate too many other carbs because I love them, and I consumed a lot of dairy.  I still eat cheese, and I use butter but I have stopped drinking milk, which I have done by the pint, since childhood.  I LOVE cold milk.  Sigh. At first and for about 6 months, I cut out fruit.  Now I can have it but only 1 – 2 units a day and not bananas.  I was even more assiduous about not eating sugars in biscuits etc.  My favourite foods are cheese, butter, bread, and potatoes so you know what?  I still eat them but less. I almost never eat chocolate, cake, sweets or dried fruits. Well, I do sometimes but if I do this on say 2 consecutive days, I always get a bleph flare up so it puts me off.  Why bother?  My gut is better (not ‘right’ but much better) and my eyes have improved. So, diet is the base-line. Following a suggestion from someone in my FB group, I switched to a tea-tree cleansing regime and this is what I recommend to anyone:  Optase Eye Cleaning Wipes.  These are tea tree (TT) based.  They are very expensive so I cut each small wipe into 6.  I use 2 of these pieces a day and I store the others for up to 48 hours in the sachet, sealed with a paper clip.  I wash my face with Boots own TT facial wash.  I wash my hair and body with TT shampoo.  And at night I wash my face again and clean around my eyes and eyebrows and hairline with Boots own TT facial wipes.  I use an intensive moisturising eye drop for dry eye disease, which I have as a result of the bleph, and I need this 2 – 4 times daily assuming I am not in a flare-up. Mainly I never wear make up anymore, really just to teach, and I protect my eyes at all times.  I wear sunglasses a lot and if it’s a dull day and I am outdoors, I wear clear glass glasses that look like specs but are just there to stop anything getting into my eyes. I keep the lights low and I avoid smoke, fumes and air-con. Supplement are important.  I take:  turmeric with black pepper, which has powerful anti inflammatory properties.  NAC (N-acetylcysteine) which you may need to be careful with, as it can bring side effects such as with me, a gut reaction but I just stopped for a week and very slowly re-introduced.  NAC works for me.  Other bleph sufferers take many different supps and I guess it is trial and error but I was loathe to take too many as I would possibly not know what was and what wasn’t helping. The turmeric has also had a profound effect on my chronic knee injury and I am now able to run again. I also take a cannabis oil supp and Ubiquinol though for other reasons but I note that both are mentioned by some bleph sufferers as helpful.  I did not take any supps before, and so taking 4 products a day seems a lot to me.  I also think these take weeks to build up, so do not expect any miracles.  Stick with it.  In the midst of a big flare or if I feel one coming, I also take anti-histamines. None of the above has had any beneficial impact on my skin by the way. The most profound changes to my eyes have been brought about by the diet tweaks; the Optase Wipes and my TT regime; and the turmeric with black pepper.  A lot of people in my group rate taking part in exercise as making a big change but I always exercised a lot so I don’t know.  If you think or know you have bleph and do not regularly exercise, I advise you to consider it, as it helped a lot of my ‘friends’, even if it is just a brisk walk every day. Now, I am not symptom free but I look as if I am 85% – 90% of the time.  My eyes sometimes hurt, are often dry and sore but they are usually not red, or swollen anymore.  Some days, my eyes feel totally normal!  I have got used to just not wearing makeup and whilst I do not feel ‘liberated’ because I love makeup and never felt like a slave to it, I feel OK about it. I hope this may help someone.  If you are in this place, please remember that you are not alone and it can be managed so that life is good again, and fairly normal.  When I get a flare up – the last bad one was about 3 months ago – I don’t panic now.  Anxiety and depression come with this, but they also make it worse.  I go back to the compresses but not too much and I just hunker down until it passes, which it will. If you are new to bleph, I am very happy to share more, if you contact me.  Bleph-warriors of the world, unite!        

One response to “Bleph-Warriors!”

  1. Elaine Cochrane says:

    Thank you for taking the time to write this. You have summed up bleph to a tee.

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