The Heavy Burden of Eczema
Having a child with eczema creates a massive stress on families that is difficult to quantify. The social, economic, emotional, and quality of life burdens eczema places on a family unit can be devastating.
I have written extensively on the eczema disease process, physiology, and treatment programs. But I think we need to talk about the toll it places on those suffering from eczema and their families. The reason I know this is important is because I have been there.
The Burden on my Family
My daughter’s eczema started when she was just 2 years old. Initially I wasn’t too concerned as I had seen hundreds of kids with eczema in my practice over the years. But as the eczema worsened in my daughter, I began to feel a bigger impact on my family that I hadn’t appreciated in my patients.
When dry, cracked areas of skin began to bleed, other moms and kids would start asking questions…
- What’s wrong with her skin?
- Why is she bleeding?
- Is it contagious?
Not only did these types of questions make me feel self conscious, I could tell they were impacting my daughter as well.
If we were in the midst of a severe eczema flare, I found myself avoiding playdates or social functions where I would get a million questions about it. As she got older, she became self conscious of her skin and the comments other kids would make.
It was heartbreaking for me to watch.
But I gained a new appreciation for what my patients were going through.
Eczema has dramatic impacts on quality of life. A 2004 study looked at the effects…
- Impacts on physical health included itching and scratching, sleep, pain, bleeding, and dietary limitations. Emotional impacts included behavioral problems, irritability, crying, and problems with treatments.
- Physical functioning was impaired via clothing restrictions; interference with activities such as bathing, playing (especially outdoors) and swimming; and having to hold children’s hands to prevent scratching.
- Social functioning was impaired: parents noted that both adults and children avoided interacting with children with AD.
Many studies have observed that as severity increases, quality of life decreases (Alzolibani, 2014, Ben-Gashir et al., 2004, Brenninkmeijer et al., 2009, Ho et al., 2010, Hon et al., 2015, Maksimovic et al., 2012, Monti et al., 2011, Torrelo et al., 2013).
A 2006 study showed eczema had the second largest impact on quality of life among chronic diseases, second only to cerebral palsy.
Parents Suffer Too
Parents of young children with eczema can be particularly burdened by a lack of sleep and by the emotional distress of seeing their children suffer.
In a study of 270 patients and their parents in Chicago and San Francisco, 61% of parents said that their own sleep was disturbed because of their children’s AD.
A UK study of 26 families with a child with eczema and 29 families with a child with asthma aimed to compare the two diseases in terms of their impacts on parental sleep.
The results were striking: mothers spent 78 minutes and fathers spent 90 minutes per night attending to children with eczema, compared with no time for parents of children with asthma.
Social isolation is an issue as well for families battling eczema, even in very young children. Over half of parents interviewed in the study by Chamlin et al., 2004 stated that adults and other children avoided interacting with their children with eczema.
Parents of children with eczema also reported that they themselves limited interactions between their children and family and friends so that they would not have to engage in discussions about the child’s skin.
The International Study on Life with Atopic Eczema found major impacts of eczema on self-esteem: 27% of those surveyed had been teased or bullied about it, and 36% said it affects their self-confidence.
The Cost of Eczema
I discussed the economic burdens of eczema in a previous blog post, The Real Cost Of Eczema.
But I think it’s worth revisiting a few of the concepts. In today’s dollars, the United States spends more than $6.62 billion dollars per year on eczema management (the real cost is likely much larger as the data is more than 15 years old).
One reason the cost is rising is that pharmaceutical solutions are getting more and more expensive.
For example, the average cost of Dupixent is nearly $5,000 per month. Dupixent is successful for treating symptoms, but it doesn’t address the root cause.
It doesn’t correct a malfunctioning immune system – it simply blocks an entire arm of it.
A 2020 study focused on 1,980 people with moderate to severe eczema. In this case, people reported a yearly average out-of-pocket cost of $20,722, with a range from $17,924 to $36,505.
Families with moderate or severe eczema reported an average $20,722 out of pocket cost.
The Time Factor
It’s hard to quantify the amount of time lost to eczema management, but a number of studies have attempted to do so. One study in a population of patients with relatively severe eczema found that families spent an average of 63 minutes per day managing their children’s symptoms. (That equates to nearly 16 full days per year!)
A significant number of parents also report having to miss work to deal with their child’s eczema.
A recent study from Germany (Weidinger, etal) showed 78% of preschoolers with eczema aged 4-6 years had missed one or more days of school in the previous 4 weeks, with more severe disease leading to more missed days. (Mild eczema missed 5 days, moderate eczema missed 7 days and severe eczema missed 12 days).
In the same study, more than half (54.1%) of infants and preschoolers with severe eczema had been hospitalized in the past 12 months. But even in those with mild cases, more than 30% had been hospitalized in the past 12 months.
Reducing the Burden
I could go on and on, but I have hopefully convinced you that eczema is a massive burden on individuals, families, and society. This is what inspired me to start my Eczema Transformation Program – a better way to heal eczema.
So where do we start?
Simply starting all kids on medication that costs $5,000 per month is NOT THE ANSWER.
Getting to the root cause of the disease is the answer. Reducing the massive inflammatory activity inside our children’s bodies is the answer. But not with pharmaceuticals and creams.
Heal the Gut
Two-thirds of our immune system resides in our gut. Thus, healing the gut is of paramount importance. For our gut to heal, a healthy microbiome must be established. Previous rounds of antibiotics and other meds devastate the good bacteria in our bellies. (This is why previous antibiotic use is closely associated with developing eczema).
Gut healing is a combination of dietary changes, environmental changes, toxin removal, stress management, and correcting nutrient deficiencies.
But this needs to be done in a systematic way. I have watched families nearly starve their children with excessive elimination diets. Food replacement should be the focus rather than elimination.
Restore a Healthy Microbiome
Dietary changes need to happen before a healthy microbiome can be restored. Taking a probiotic while eating a diet high in sugar and processed foods is a waste of time – and bacteria.
Similarly, starting a number of supplements at once can cause abdominal cramping, diarrhea, constipation, and a number of other complaints. And what supplements does one choose? What order? Supplements are not regulated and consumers pick and choose based on google reviews rather than scientific data.
Environment, Stress and the Skin
Environment plays a huge role in eczema. But what does one pick and choose for maximum effect?
The skin microbiome plays a crucial role in skin irritation, itching, scratching and bleeding. This must be addressed as a part of the comprehensive healing solution
Let’s not forget stress, the most under-recognized toxin in our lives.
The bottom line is – you need a roadmap to recovery.
To find out more about my blueprint to start your skin journey, follow the link below.
The Eczema Transformation Program
Yours in Good Health, Ana-Maria Temple, MD
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