Eczema is constantly minimized or seen as nothing more than just “some patches of dry skin” or a “little rash.” However, the hard truth is that there are many kids and adults who are struggling deeply with daily skin care routines, nonstop cycles of flare-ups, and the constant itching and pain that comes with this condition.
It is a truly life-altering condition for many who are affected. One study compared the health-related quality of life for children with chronic skin conditions to other chronic diseases of childhood (including diabetes, epilepsy, asthma, kidney disease and cystic fibrosis). Chronic eczema was ranked second only to to cerebral palsy in regards to impairment of quality of life.
What does living with eczema look like?
Our journey with eczema started back in 2014 when my baby girl Isabella was two years old. She did not have it as a baby but everything developed so fast.
We have visited countless doctors around the globe (literally in the USA, South America, South Africa-online) and spent a lot of sleepless nights trying to understand more about this condition.
We have been depressed, anxious, and we have cried together and alone.
Last year during an Eczema Expo I saw this quoted, “Eczema is the disease that won’t kill you but will ruin your life.” That is exactly how you feel. One of the downsides of having atopic dermatitis is that even when your little one is enjoying a few weeks of having relatively clear skin, you never know when a new flare is coming back. You never know what might trigger its return.
We have been stuck in a state of paranoia because even though we know some of the triggers for our daughter eczema, anytime a new one can show up.
During this journey through eczema we have received staring looks at our daughter and people have asked if she was contagious. One time someone asked her if she had chicken pox. She looked into my eyes and started to cry.
She even told us one day that she did not want to have a mirror in the house because she did not want to see herself. This was so painful for us as parents.
Strength has been shown to us.
We are grateful for everything this journey has given to us.
In spite of all the bumps in the road, we are thankful.
We have met amazing people during this journey. Amazing parents have bonded with us because we have one big thing in common: we all know what it is like living with eczema.
The support we have received from our family and friends has been amazing. Even though they were not in our shoes, they were always there to hold our hand in the hardest times.
There is support for families living with eczema.
The National Eczema Association (NEA) is using the month of October (Eczema Awareness Month) to campaign to #unhideEczema. In their website they have countless resources for kids and adults living with eczema.
You can also visit the Global Parents for Eczema Research website. This parent-led non-profit organization advances research and policy changes that lead to better treatments and prevention strategies for children living with eczema.
Lets celebrate together Eczema Awareness Month!