How could I put all my hopes in a hospital clear across the country?
Was I referred to National Jewish Health’s pediatric immunology program by a doctor? No.
Did I ever hear of National Jewish Health when I googled eczema? Never.
To my surprise, social media led me there. Particularly, a Facebook support group for parents of children with severe eczema, “Eczema Parents”.
For the first time, just a couple months ago, I joined the group and was bowled over by the shared experiences of other parents. There were parents all over the world whose children’s struggle with the relentless itch mirrored our own. Many even had food allergies and asthma as well.
I recognized the 3 am posts of parents at their breaking point who were still awake holding their children’s
hands from tearing their skin apart for the 12th straight hour, laments at bloody sheets,the screaming fits that occurred every time they attempted to bathe their child, wracking their brain over what their kid could be reacting to this time, where they let their guard down. I knew this. I recognized the confusion, anger, frustration, isolation and worry about their beautiful children’s skin turning against them.
I saw pictures of babies with terribly inflamed skin, enough to make my look away, though my own child’s skin looked this way so often.
The responses for each post embodied everything a support group should. Non-judgmental, experience and science based.
Parents contributed what worked for their child without insinuating that it was the only way to solve it. Responses were careful and empathic. So much of the advice was useful on quick remedies (ice on a paper towel soaked with olive oil to simultaneously calm and moisturize raging skin-genius!), distraction techniques and long term preventative solutions like wet wrapping, anti-scratch mitts, very basic and non-irritating emollients, and bathing solutions.
I loved the strict ban on selling this page. Typically, if you are looking online for solutions for eczema, you have to wade through a crowd of people hawking ineffective, and sometimes flare-inducing oils and creams. Not here.
I often saw some of the most helpful posts and comments coming from parents mentioning “learned while at NJH” so I started to ask a lot of questions about NJH, logging hundreds of hours of Facebook time viewing mouth watering responses : “my family is completely changed after going…first time I’ve seen my son clear…I can still call and get step-by-step advice..my son’s skin is 95% better!.. NJH is a god-send…truly a miracle!”
The FB group Eczema Parents was started by another eczema parent, Rochelle, who desired to help other kids that have eczema. Her daughter is a beautiful 17 year old now with her eczema under control, but lived the first 7 years with very severe, painful eczema and food allergies and received the same inadequate diagnoses and treatment from their dermatologist.
Rochelle and her daughter went for treatment at National Jewish health almost 10 years ago and wanted to have a platform to share the info. she learned, whether or not parents could make the trip to NJH.
I was sold when I read another member’s blog of her experience at National Jewish Health with her 4 yr. old daughter last year Overcoming Eczema, Food Allergies and Night Terrors
So here is to Rochelle, Nancy and all the other Eczema Parents for being there at 2am. You give me hope that there is a light at the end of the itchy scratchy tunnel.
I raise a big, greasy tub of emollient to you!
Now go get yourselves a real drink.