A dermatologist mother’s story: My journey with Eczema

Posted by Dr Nokubonga Khoza on

Although I have spent most of my life studying and practicing dermatology, my real job first and foremost is being a mom. My kids are my pride and joy and I would do anything for them. As a mom, your instincts to protect can overwhelm your most basic logic and reasoning, even rejecting reality to help your beloved. This is the space I found myself in when dealing with my daughter’s eczema, and this is the story of my struggle and my journey with eczema.

Eczema: A complex chronic condition

journey with eczema

Eczema, or atopic dermatitis, is a chronic condition which means it cannot be cured, it can only be managed. It presents as patches of dry, itchy and sometimes red skin which may subside for periods and also increase in severity for periods. Sadly, it’s one of the most common health problems seen in children and infants, those suffering from eczema require great understanding from others. A chronic condition is like a shadow that follows you, often impacting on the quality of life. Regardless of how rigorously healthy a patient tries to be and consistent the treatment plan is, flare-ups happen, accepting this reality will better equip us to deal with the challenges.

 

Food allergies can contribute to the severity of the symptoms, however, diet is not the cause or the cure for this condition. Other factors, like stress, also play a major role in bouts of severe inflammation, as do seasonal changes. Many of these factors are out of our control, as doctors, patients, and parents we simply need to understand that the best we can do is manage the symptoms.

 

Eczema is thought to be largely hereditary, as it appears the body suffers a dysfunction in filaggrin, the protein responsible for maintaining the membrane of skin cells. In the case of children especially, the condition can leave entire families feeling helpless to the suffering of a loved one, regardless of who you are.

 

Eczema can affect anyone, even the child of a dermatologist

 

As a dermatologist and a mother, I felt like a complete failure. My little girl’s well-being and comfort was out of my control. Watching her suffer was unbearable, and yet I was the expert. I felt I had to do more than the treatments I gave out on a daily basis, so I introduced rules into our lives about diet and lifestyle to give myself the illusion of control. I imposed strict restrictions on sport in an attempt to protect my daughter from situations that would decrease her self esteem and confidence. As moms we fear for our kids being bullied or ridiculed for their skin issues, so we try to shield them from the world when we should be empowering them to be tough and stand up for themselves.

journey with eczema

In my clinical practice, I’ve never seen a calm mother faced with the reality of her child’s eczema. Now I was experiencing it firsthand in my own life. The most common question moms ask me is: “what food should I cut out?” That comes from a hope that there is at least one variable they can control. This is followed by the brave request for a pill to clean out the blood from the inside. Unfortunately, eczema cannot be cured by either.

 

The treatment available for eczema

 

At this present time, there is no cure for eczema. The best way to manage the condition is with the help of a dermatologist. A regular and consistent routine does not need to be long or complicated, but it will help keep the condition in check. This does not mean bad bouts of inflammation and irritation won’t occur. A flare-up is absolutely not a reflection of how well a patient is cared for or how rigorous the routine is, flare-ups occur simply because it is the nature of the condition.

 

Wet wraps provide moisture to the skin during periods of flare-ups and topical cortisone creams can keep inflammation levels down. Sun protection is very important as is the avoidance of harsh skin products and skin irritants. Removing any food group the diet where there is no food allergy present will not cure the condition. It will, however, further hamper the way the condition impacts the life of the patient. As a mother, this is a difficult reality to face, despite the evidence and the knowledge I was equipped with.

journey with eczema

For two years I did not allow my daughter to eat ice cream. This rule didn’t just come from our struggle with eczema but from my need to be in control as a mother. I blamed it on the eczema but when she started questioning the reasoning, things spiraled out of control.

 

I kept adjusting our family’s habits and lifestyle to cover the gaps in my logic. We moved to soy as a family because of my daughter’s “milk allergy”. We replaced yoghurt with sorbet. I couldn’t bring myself to cut cheese from our diets, so I came up with a scientific explanation for why cheese was okay. I managed to keep control over this family secret for two years. My husband never questioned a thing, after all, I was the specialist.

 

Eventually, I sent my daughter for a consult with a colleague who cut through the illusion. Losing control of the rules was difficult for me, but now we face her eczema daily with the reality of its challenge.

 

Our journey with eczema is ongoing, but we stay positive

 

My consolation is my confidence in dermatologists and scientists worldwide finding a cure. We are getting closer to fully understand the physiology. Right at this moment, some young scholar is putting it all together for us, bringing us one step closer to a cure. For now, we just need to be patient with the solutions we have in order to make eczema sufferers more comfortable and equip them to deal with the difficult scenarios life throws at them. As painful as it is, as moms we need to support our kids in the reality of what they are facing, even if it means feeling like situations are beyond our control.

← Older Post Newer Post →