Monday, 25 March 2013

Adult Eczema: My Story


On my blog travels I've noticed that there are many people who suffer with sensitive skin, eczema, dermatitis and other skin complaints. There are plenty of resources and products out there that claim to help but what do you do when you've exhausted all options and the medical profession don't seem to want to waste their time and resources on you?

That was my experience. 

So, I would like to put in my two-pennies-worth on the subject in the hope that something I say resonates with other sufferers and maybe, just maybe helps someone. Today I'm simply going to tell my story of growing up with and coping with eczema, but in the future I'll be recommending products that I've found are gentle enough for my skin, in the hope that you might love them too!

Childhood
I have had eczema for as long as I can remember. Growing up, as with many childhood eczema cases, it was mostly concentrated on the backs of my knees and the insides of my elbows. It would become red raw and I would scratch it till it bled.

However, I never thought much of it. My older sister had eczema and it was much worse than mine. In comparison, my eczema seemed pretty mild, and when my mum questioned the doctor about it, he just told her to do whatever she did with my sister. So for the whole of my childhood a doctor never even looked at my eczema, we all thought it was pretty mild, and I got by with mild steroid creams whenever I thought it was necessary to use them.

2007: Age 22
The first time I went to the doctor about my eczema I was 22. It was just before my wedding and out of pure vanity I was desperate for my skin to look better. I had dry, flaky skin around my mouth and my legs were covered in blotchy, dry, red patches. To me, this was normal, and probably because of my own relaxed attitude, the doctor didn't think anything of it, she prescribed me some stronger steroid creams and Diprobase and sent me away.

2011: Age 26
At the beginning of 2011 I had stopped sleeping. I would lie in bed all night scratching, which was awful for me and awful for my husband. I was exhausted and nothing seemed to work. So I finally went to the doctors. I told him that I had suffered with eczema my whole life but that it had never been looked into and that I was exhausted. He prescribed me some more steroid creams and referred me to a dermatologist.

It was March, my dermatologist appointment was scheduled for July. That's a long time to wait when you're desperate.

At the end of March I visited the Country Living Fair where there was a company exhibiting that made skincare products from goats milk. My face was having a particularly bad day (red raw around the mouth) and they promoted their products as being great for eczema sufferers. I got talking to the owner who began to tell me all about the foods that we eat and how they affect our skin. He recommended that I switch to goat's milk rather than cow's milk and cut back on acidic foods like tomatoes and orange juice.

I spoke to my mum who had to put my sister on a very restricted diet when she was growing up and what the man said appeared to match up with her experience. So I thought I would give it a go. I switched to goat's milk and cut out cow's milk, cheese and chocolate. And within about two weeks my skin had drastically improved. Amazing!

There was a consequence to this, however. It wasn't long before traces of milk in other foods were giving me severe allergic reactions. It wasn't just an eczema flare-up anymore, it was a reaction concentrated around the mouth and eyes - dry, red, flaky skin accompanied by dark shadows under the eyes (I looked like I had been punched in the face!), blotchy skin over the rest of my face and in severe cases, a swollen tongue (which thankfully never progressed to difficulty breathing!). I even began having this reaction if I consumed goat's milk as well, so I had to cut that out too.

The doctor advised me that this is known as Allergic Blepharitis. He is the only doctor I have seen in this whole saga to actually acknowledge that I may have an allergy.

So, after a few months of cutting out every trace of milk from my diet my skin was looking pretty good (or so I thought!). It was finally time to go to the dermatologist who I thought would discharge me straight away. This is how my appointment went:
Dr: So when was the last time you saw a dermatologist?
Me: Never.
Dr: What do you mean?
Me: I've never seen a dermatologist.
Dr: So what have you been using?
Me: Hydrocortizone on the affected areas and Diprobase as a moisturiser.
Dr: And no one's ever prescribed you anything stronger or referred you to a specialist?
Me: No.
Dr: Hydrocortizone is for use on babies skin. It's so mild it won't do anything. Your skin is one of the worst cases of adult eczema I've seen in a while.
Me: Really? It's pretty good at the moment. Since I cut out dairy it's been a lot better.
Dr: You don't need to cut out dairy. There is no link between eczema and food.
Me: Well it's made a huge difference to my skin. And if I eat it now I get allergic blepharitis.
Dr: No, there isn't a cause of eczema, you just have it or you don't.
Me: My GP said you would test me for allergies whilst investigating my eczema.
Dr: No, there is no link.
Me: Well, I'd really like to be tested.
Dr: Ok, well I'll authorise some blood tests, but it has nothing to do with your eczema. Here you go, they will test you for cow's milk and cheese. (Isn't that the same thing?).
Me: Thank you.
Dr: Here is a prescription for a million different creams which you should use for different purposes, none of which I will write down for you so you will forget once you have left this room.
Me: Thank you.
Dr: I would also like to recommend you have light therapy, but it will involve coming to this hospital three times a week for the foreseeable future.
Me: I'm sorry, I have a job 60 miles away from here. I don't think my employer would allow me three mornings a week off work to lie on a sun bed.
Dr: That is a shame. Come back in six months when we will review your treatment. Your GP will write to you with your blood test results.
Me: Thank you. You have been most unhelpful.
Ok, so that's not an exact transcript but you get the gist!

Weeks went past and I heard nothing from my doctor, so the next time I went to the doctors I enquired:
Me: I also had some blood tests at the dermatologist in July. I haven't heard anything. Do you have the results?
Dr: There is nothing on your file, have they asked to see you again?
Me: Only in December for a follow-up.
Dr: They will give you the results then.
Me: That is four months away, am I just supposed to cut out dairy that whole time?
Dr: If you find that you're reacting to it then you probably should.
Me: Thank you, you have been most unhelpful.
I went away, continued to cut out dairy and continued to use the creams for which I could not remember their purpose. The one thing that did help, however, was replacing my high-street shower gel with Dermol 500 - an over the counter lotion specifically designed for dry skin conditions. If my skin started to become dry, I would also have Oilatum baths every night for a week and it would get back under control.

Four months later I finally went back to the dermatologist:
Dr: Your skin is a lot better than last time. I am going to discharge you.
Me: But I would like to know the cause of my eczema.
Dr: There is no cause. You just have it. The only thing you can do is manage it with all these creams for which you can't remember their purpose.
Me: Last time I was here you took some blood tests for allergies, I was told you would have the results.
Dr: Oh, let's have a look... here they are. You are not allergic to cow's milk or cheese.
Me: But my face swells up when I eat them and my eczema does flare up.
Dr: You are not allergic to cow's milk or cheese. Go home and eat a pizza.
Me: Thank you, you have been most unhelpful.
I did not go home and eat a pizza. 

Present Day
So where am I at now?
  • That was the end of 2011 and I have been dairy free ever since. 
  • My eczema is virtually non-existent, apart from some dry patches and scarring on the inside of my elbows. 
  • I continue to use Dermol 500 instead of shower gel, but I am slowly introducing other products in the hope that sometimes I can treat myself. 
  • I still have an allergic reaction to dairy products and I admit that it is hard. I would not recommend cutting out a food group until you have consulted your doctor and hopefully a dietician (do as I say, not as I do!). 
  • My skin is still very sensitive, particularly on my face and I have to be really careful what I put on it. 
  • But overall I am managing.
'll be posting more about the products I use and testing new products to see whether 'Suitable for sensitive skin' ever actually extends to us eczemary types so stay tuned! If you have any questions at all about adult eczema, I'm happy to help from my own experience, however I do recommend you go and see your doctor and check out The National Eczema Society for more information.

***

I've linked up over at Verily Victoria Vocalises for Post Comment Love

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20 comments:

  1. i have always suffered and i am at my wits end with it at the moment! i may have to try this

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    Replies
    1. Sorry to hear that, Jaime, there are ways to make it better. I think sometimes we just accept it as a condition that we have rather than doing something about it. I'm keen to try more things that tackle it from the inside out, like drinking Aloe Vera, as slathering chemicals on ourselves doesn't seem to make much sense!

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  2. Hi Emily - Wow, what a journey you've been on and how rude of the consultant to dismiss you in that way. I truly believe what we eat and put on our skin has a direct affect on it. You should pop across to the blog "Sugarpuffish". Sarah has suffered with eczema since birth and writes a fab blog about it reviewing free-from skincare products and foods etc. She's at http://www.sugarpuffish.blogspot.co.uk/

    Good luck with the blog. Found you via #PocoLo xx

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    Replies
    1. Thanks, Charlie, I will check that out. I agree, I don't understand how what we put into / onto our bodies can not have a direct effect on our skin. It's just common sense! xx

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  3. Hi Emily
    Gosh that's some experience! Poor you.

    I have suffered with cystic acne for years and years, which I know isn't eczema, but does mean that I can totally empathise with the effect on self-esteem of having red skin.

    I didn't want to go down the route of harsh medicines, and have been having acupuncture, which has been great. I just thought I'd mention it in case it could help you? Also drinking aloe vera can be very good for skin conditions. I have written about it all on my blog.

    With regards the dermatologist...I feel your pain. It is such a shame that these medical professionals can't be more open-minded. I'm not slating all doctors, as they are very over worked and do some amazing things..but it would also be good for them to ensure they listen and really hear their patients, which it sounds as though didn't happen here.

    I really hope you continue to improve on your journey. I found this via #PoCoLo but will be popping back to see how you're doing.

    Take care, xx

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    Replies
    1. Thanks for stopping by, yes it can be horrible and I can only sympathise with regards to acne! I haven't tried acupuncture but yes I've heard drinking aloe vera is very good. The Doctor who diagnosed me with allergic blephoritis was very good, and even expressed frustration with the dermatologist for only prescribing steroid creams rather than looking at the root cause, but unfortunately these days you never see the same Dr twice!

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  4. Eczema has to be one of the most irritating and upsetting conditions which doctors don't take seriously enough. Our family have all suffered from eczema in one form or another and my youngest brother was so bad my Mum did the same with his diet. I am do pleased that things have improved. Thank you so much for linking up to PoCoLo x

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  5. Try visiting itsan.org it is a great resource for people with "incurable" eczema.

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  6. I have been allergic to cows milk since I was a baby (my birth year is 1971). Every doctor I have been to for it (including the dermatologist I saw from age 3 into my 20's) has linked cows milk to my flair ups of eczema. I can ingest c-milk very occasionally but if I go over board and am not vigilant about what I am eating I suffer from severe break outs. Mainly on my face, arms, back of my hands/fingers and the crack of my butt. I will also get small spots on the back of my legs and the tops of my feet. If I have an extremely bad breakout my entire face swells a bit, the corners of my mouth, nose and eyes become raw and cracked, my eyelids get scale to the point where if I move them to much or open them to wide the will crack and bleed. Also because they are open wounds that take forever to heal I usually end up with cellulitus and have to visit an infectious disease doctors and be put on heavy medications and be closely monitored. I end up looking like my entire face has been badly burned.

    The steroid creams work great on the rashes but pronged use will damage your skin by making it thinner, excessively fragile, and cause the areas you use it on to become discoloured/darker (it looks like a scar that never complete heals.) If I were you I would start interviewing different dermatologist and find one that doesn't have a God complex and whoses head isn't inserted where the sun never shines. Also look into non convential doctors. Most likely you will never completely eradicate it but they can help you use other means of controlling it and minimizing the break outs.

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    Replies
    1. Sorry about my spelling errors. I commented while I am on my smart phone.

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  7. Thank you for writing this. I am 41 years old, and about 4 months ago I broke out in eczema around my mouth. I've tried everything and it won't go away. I have not been to a doctor, because I don't have much faith in them, and after reading your blog, you probably understand why. I stumbled upon the connection of dairy and eczema while researching something unrelated (plant based diet)..which led me here. I'm glad to hear you've been able to alleviate your eczema with dairy elimination - I think I will give that a try. As an infant I was allergic to milk and had to drink goats milk, but supposedly out grew it.

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  8. What an interesting post! This year (after suffering horrible with sinus issues and hayfever last year) I have developed three different types of eczema. My plan was to cut down on dairy as of next week and so it should be interesting to see how it affects me!

    Thank you for bringing such an important topic to light!

    LT x

    http://kind-regards-c.blogspot.co.uk

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  9. Hi,

    My poor little niece who is 4 years old has eczema pretty bad. I have a solution to eczema (and psoriasis), as well as some other skin care issues. If you have never heard of Arbonne, Swiss botanically-based beauty products, I would highly recommend it. Many of their face care lines help people with acne, rosacea, broken capillaries and facial dryness, oiliness and redness. Their SeaSource Detox body gelee (best for eczema), and the 5-in-1 massage oil (for eczema and psoriasis), have both been very successful in elimiating eczema overnight. This is one reason I became a consultant for Arbonne. Quick and lasting results – from vegan-certified, gluten-free and GMO-free products.

    Arbonne's products are also free of: parabens, mineral oils, petrolatum, phthlalates, sulfates, animal by-products/fillers, chemical fragrances/dyes, etc. They are NOT tested on animals. Yay! They are also hypoallergenic.

    I recently gave my neighbor a sample of the body gelee to use on her grandbaby's eczema on her legs, and she said it's clearing up quick. Within a day. Also, Arbonne's baby line is amazing for adults too in clearing up skin problems. The diaper rash cream has a ton of different uses from rashes, bug bites, chapped skin and many more.

    You need a consultant to get these products at the discounted price. I am a consultant with Arbonne. I don't rave about these products just to sell them, I sell them because they are the best products I've ever used in my lifetime and I’m so psyched to tell others about them. I hate seeing people with skin care issues, and spinning their wheels (and spending all of their money!) trying to figure out the best product for them.

    Arbonne has the following products: baby skin & hair care, anti-aging skin care, aromatherapy/spa, hair care, health & wellness, fitness/nutrition.

    If you are interested in hearing more about these products, please contact me. I am not opposed to sending out samples for free, should you really be interested in trying some of their safe and wonderful products.

    You can reach me at the contact info below:

    E-mail: kkornichuk@myarbonne.com
    Website: www.kkornichuk.myarbonne.com
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    I look forward to helping you!

    God bless,
    Karen

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  10. Very interesting...I am 38 now and have had eczema since being a baby. At times I've been covered head to foot with horrible weeping sores, mostly it's under control on the whole and just the odd patch. What I have found though is the Whole30, which cuts out a lot of things for 30 days, dairy being one of them. The first time I did this, at the end of the 30 days my skin was amazing - it quite literally looked and felt like it should belong to someone else. Not a single dry patch, let alone any eczema. No need to use moisturiser, and I was able to use products that in the past had made my skin react. (I usually use Naked Skincare products, they are very good, and reasonably priced.) I now eat that way for two or three weeks every couple of months and mostly keep my skin under control.

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  11. I'm glad I found this post. I have always suffered with eczema but most recently in dark rings around my eyes and mouth... The doctors keep throwing creams my way but will not refer me to a dermatologist. I'm just back from ANOTHER appointment which resulted in no extra creams and a "you'll be like this for a long time". Needless to say I feel annoyed. Can you tell me more about things you cut out in your diet? Thanks very much. Lotty

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  12. I am so glad this post is still helping people over a year after it was written. I will do an update on my skin soon as there have been some developments.

    Lotty, definitely push for a dermatologist referral - I find that crying helps! I've finally seen another one recently and he was furious that I had not been referred until now.

    I cut back mainly on dairy - first of all switching to goats milk and avoiding cheese. But as I say, this then developed into a much stronger allergy so be really careful. I was advised by some people to cut back on acidic foods but I didn't really stick with this because so much of my diet is tomato based when you can't eat dairy - so I couldn't tell you whether it worked or not. I do think that if you have an intolerance then you should try to build up your tolerance rather than cut things out all together but do seek a doctor or dietician's advice.

    If you can afford to treat yourself, definitely try Liz Earle skincare products. They were my saving grace when my face was bad and literally the only product I will use on my face. I bought the hot cloth cleanser, toner and moisturiser as a last ditch attempt when I looked like I had been punched in the face (I almost cried at the shop assistant!) and within a week of the regime my face was perfectly clear. Lots of eczema sufferers recommend it so might be worth a try if you have a spare £40. I know how emotional it can get when you're really suffering on your face!

    Hope that helps! xx

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  13. Hi Emily,

    I would love nothing more than to share your Eczema Story at my eczema magazine portal http://eczemag.com. I myself am an eczema and topical steroid addiction sufferer and has gone through hell as you described. Having recovered from TSA, I'm on a personal quest to increase awareness of our skin condition and hope to educate the greater public on this disease.

    Do take care and best wishes,
    Leslie C
    Founder of http://eczemag.com
    Personal blog at http://saynototopicalsteroids.com

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  14. To think, I used to worry I had eczema because I had some rough patches of skin on my arms now and then - but this right here is what having eczema is really like. I'm happy to hear you finally found an effective eczema treatment though - I don't think most people ever do. :/

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  15. Hi Emily,

    Thank you for sharing your story with eczema. I am 32 and have been suffering with eczema now since I was about 17. I seem to have got to an equilibrium that works for me, however, I do still detest the redness that I have around the t-zone on my face. My chin, upper lip and besides my nose, particularly one side, can get really red and even seep sometimes.

    It's interesting you and others mentioning about cow's milk and dairy in general seeming to be a cause. A few months ago I had a feeling that milk, which I used to take regularly with my cereal in the morning, was not helping it. It was a completely instinctive realisation, but seems to be backed up by your experiences.

    Eczema is such a depressing, and I don't use that word lightly, thing to cope with. Thanks for being strong and sharing how you've managed to get through. I look forward to more shares in the future.

    Best wishes
    Matthew

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  16. Thanks Emily! What an interesting post! This year (after suffering horrible with sinus issues and hayfever last year) I have developed three different types of eczema. My plan was to cut down on dairy as of next week and so it should be interesting to see how it affects me!

    Thank you for bringing such an important topic to light!
    Ruby

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