Despite what most people think, Eczema is not just a Rash. Eczema is life disrupting, in every possible way from eating & sleeping to the ways we bathe, work, learn, study & socialise.
11. There are lots of different types of eczema
Eczema is a broad name given to a number of inflammatory skin conditions characterised by red, inflamed itchy skin. Atopic dermatitis, hand Eczema, Contact Dermatitis, Seborrheic dermatitis, Dyshidrotic Eczema, Nummular Eczema, Stasis Dermatitis, Infantile Eczema to name a few.
10. Eczema takes daily management & monitoring
Regular GP, Dermatologist, Immunologist, Paediatrician, Allergist appointments are just the beginning! Then there’s Special clothing, trying to avoid known triggers; foods, stress & heat/cold/windy/humid weather. Daily application of even a basic moisturiser if skin is under control & taking note when it looks like the eczema skin is starting to flare so we can get it back under control again are just a very small few things we are doing every day when living with eczema.
9. Living with Eczema can be VERY expensive!
Even when eczema is clear & under control we still go through Organic seam free clothing, a 500g tub of moisturiser, antihistamines, & bottles of bath oil a week. Then when itchy eczema is flared or infected there are hospital trips, time off work or school, specialist appointments (of which you will be lucky to get a very small portion back from your health care fund or Medicare), medication, specialty creams, bath preparations, wet wrapping garments for eczema, allergy testing, 100% organic clothing, cotton gloves, hot washing everything & putting in the dryer (if pollens & grasses are an eczema trigger for you) & if you are lucky enough to have allergies too Gluten, Dairy, Nut, Egg, wheat, Soy free foods. A national health document stated that the average Australian family will spend $5000.00 a year on managing their eczema, that I’m afraid is just a drop in the ocean of what most families I know will spend this year on eczema treatment.
8. Living with eczema disrupts your sleep & if a baby or child has eczema, the sleep of the whole house!
We all know how important sleep is for our general physical & mental well being. Sleep helps your brain work properly, tissues regenerate, muscles tissues are repaired & the cardiovascular system slows right down conserving energy & repairing ready for a new day. So what happens when you cant stop scratching your eczema skin all night long? What happens when your baby doesnt go into that deep REM sleep because he cant stop crying because the itch of his eczema skin just wont give him any relief? All you have to do is google sleep disturbance in eczema & you will be presented with clinical study after clinical study documenting that both adults & children with eczema have higher rates of behavioural disturbances, insomnia, daytime sleepiness & mood disorders resulting in a greater number of doctors visits & time off work/studies than those without eczema.
The following abstract is from a Thesis into Eczema, sleep & daytime functioning in children from Danny Camfferman from the school of paediatrics & reproductive health Adelaide University research: “Eczema affects up to 20% of children in western industrialised countries. Chronic childhood eczema has significant morbidity characterised by physical discomfort, emotional distress, reduced child and family quality-of-life and, of particular note, disturbed sleep. Sleep disturbance, characterised by frequent and prolonged arousals, affects up to 60% of children with eczema, increasing to 83% during exacerbation. Even in clinical remission, children with eczema demonstrate more sleep disturbance than healthy children. Disturbed sleep in otherwise healthy children is associated with behavioural and neurocognitive deficits. Preliminary evidence suggests that disturbed sleep in children with eczema is also associated with behavioural deficits while the impact on neuropsychological functioning remains unexplored”.
7. Its painful
Eczema can be very painful, inflammation can trigger nerve pain, fluid filled blisters, deep fissures & cracks in the skin are very painful to treat & return moisture to and if the skin has become infected that only adds to the everyday pain of living with eczema. Then if your eczema happens to be where your clothing rubs, on your genitalia, eyelids or mouth you can double that pain factor.
6. We have low self esteem
“Oh what happened to your babies skin, did she get burnt”?
“Wow your face looks really red today, have you tried makeup to cover it”?
People living with eczema are extremely self-conscious & are more likely to suffer from social anxieties & depression, often choosing to avoid social situations than have to deal with glances, comments & bullying that may arise from their eczema skin rashes.
In 2006 a study published in the British Journal of Dermatology, researchers surveyed 379 children with chronic skin conditions. They found these children felt more stressed as a result of their condition than children with other chronic diseases, including kidney disease and epilepsy.
“Skin diseases are often more obvious to other children than chronic diseases such as asthma or diabetes, and are more likely to lead to alienation, name-calling, teasing and bullying,” researcher Paula Beattie of the Royal Hospital for Sick Children in Glasgow said in a press release.
5. Having Eczema makes you more prone to secondary skin infections
In eczema skin the very basic of the body’s defence mechanism against infection (the skin) is damaged & even with careful treatment & management, people with eczema are prone to secondary infections. The pictures above are from my daughters 6wk say in hospital fighting infection in her first term of Kindergarten. Impetigo had been reported in her class & even with all the precautionary measures we implemented the infection took a hold of her body (very surprisingly NOT in places where she had her eczema flares; backs of knees, elbow creases etc) & eventually entered her blood stream. Staph infections, Impetigo, hand foot & mouth, herpes simplex, bacterial infections & molluscum contagiosum are just some of the infections that people with eczema are more prone to & suffer for a longer period than the general public.
4. Eczema is an immune response
This year there was a study published stating the long believed philosophy that eczema is indeed at Autoimmune disorder.
“Our pioneering study showed that the abnormalities in the skin barrier and in the immune system that characterize atopic dermatitis can be reversed by drugs that narrowly target just these two immune signalling proteins,” said Dr. Guttman-Yassky. In this study, patients treated with dupilumab enjoyed significant clinical improvements compared to those treated with a placebo. These included reversal of the abnormalities that characterize atopic dermatitis in skin tissues within four weeks of the dupilumab treatment.
“This study is the first evaluation of a treatment that targets specific immune proteins in atopic dermatitis where mechanistic changes track closely with clinical measures of disease and relief from it,” said Dr. Guttman-Yassky. “It’s hard to predict how long it may take to complete Phase III studies, but we will probably see new drugs available to treat atopic dermatitis in the next few years.”
3. Itchy Eczema is NOT contagious
We know that when itchy eczema skin is flared & angry red or even weepy that it can look pretty horrifying to people who have never experienced eczema, but eczema is an allergic condition, as discussed above eczema is an immune response & in no way shape or form contagious.
If you have any questions about eczema or our/our children’s skin rash please just ask, don’t assume, don’t come to your own conclusions based on what your cousins, aunts, next-door neighbours best friend once told you. Please, just ask.
2. We need your acceptance, not judgement
Living with eczema can be a mental & physical battle. People living with eczema already judge themselves enough & we don’t need you to add to that.
I know personally when I was younger & Nursing I had days when my skin was so red, angry & insanely itchy I just didn’t want to leave the house, but I would talk myself round & off to work I would go. Once there people just could not help but comment when my eczema was flaring on my face, suggesting that I try everything from laser dermabrasion to goats milk products. I even had patients refuse to have me look after them as it “looks infectious”.
Thanks, I was already feeling pretty crappy about my appearance.
The same goes for parents of children & babies with eczema, please don’t judge! That poor mumma or dadda has probably been up all night trying to console an itchy baby, they are probably keeping a diary on babies every movement, food & visit in an effort to identify & limit triggers, they are probably traveling 2hrs+ to see a paediatrician, dermatologist or immunologist to find the missing pieces to their babies eczema puzzle, eczema parents can be very fragile so please, please don’t judge.
People with eczema usually have a great sense of humour & are some of the most kind, caring & fun people you will ever meet.
So please just accept us for WHO we are NOT WHAT we have.
1. Eczema – There is no cure
Yep you heard right, there is NO known cure for eczema.
I know I know, you saw on Today Tonight or ACA that a lady made a cream in her kitchen, that a guy started cooking up goat’s milk soap or that a special diet cured peoples eczema.
Sorry but not true.
The World Health Organisation & all the words Eczema, Immune & Dermatological professions do not recognise any cure for eczema.
Even when people with eczema are in clinical remission & have no red or inflamed patches when examined under a microscope the skin condition is still evident.
Having said that, ECZEMA CAN most definitely BE CONTROLLED!
The people you saw on Today tonight or ACA may well have been able to get their eczema under control through diet, goats soap or by using a certain cream & that’s the frustrating part of living with eczema. The oatmeal baths that appeared to cure your sister’s eczema may well flare your babies’ eczema making it more itchy & red than ever before.
Universal treatments like & diet changes (like those found in The Eczema Diet) do seem to provide long term relief for a majority of eczema sufferers, however at the end of the day there is no known cure for itchy scratchy eczema.