English

Congratulations! It’s a boy!

So much excitement – so much joy!

It was the birth of my son on a Wednesday night

Those little features – what a wonderful sight.

It was a month later – I was proud as can be

Strolling outside with my baby so that everyone can see.

How cute he was in his carriage so new –

Short-sleeved polyester romper and tiny socks too.

He just had a bath – he smelled so fresh and clean.

I smeared him with baby lotion – he was the cutest I’ve seen!

I walked and strolled with my head held up high –

I thought he was noticed by every passer-by.

But then a while later (four months old was he)

I was no longer as proud as can be,

For “he has atopic dermatitis”, the doctors said

When they looked at the rash from his toes to his head.

To go out shopping I did dread

For on his face he had a rash fiery-red.

The polyester rompers were packed away;

Now he had to wear long-sleeved cotton each day.

The five pediatricians and two derms that we went to

Said, “Smear cortisone, moisturizers, give antihistamine too”.

Mother, neighbors, and friends had advice for me;

Also my mother-in-law, cousin, and landlady!

The more I heard, the more I got confused;

What does help? What method should be used?

The advice was all different – it was quite a riddle;

Everyone said opposite things – I was caught in the middle.

“Change the formula – use no cortisone on someone so small.”

“Just use cortisone cream –

the formula has nothing to do with it at all.”

“Bathe him twice daily and he’ll clear up – no doubt!”

“Bathe him once a week – water dries the skin out!”

“Keep him undressed and out in the sun – Just try.”

“Don’t keep him in the sun – his skin is too dry.”

“Just keep on nursing him – don’t try to stop!”

“Don’t drink milk when nursing – not even a drop!”

“Stop nursing him – he’s allergic to certain food.”

I was confused – and in a lousy mood.

I didn’t feel like taking him out for strolls down the street;

“Oh, poor little baby!”, said the old women I’d meet.

Wherever I went, no one did fail –

They all had advice, a story, a tale.

From all I heard, what did I gain?

At 10 months old, he still looked the same.

All the doctors with all their degrees

Had no advice or no cures for me.

Where does this come from – this itch quite strange

“that happens when the weather does change”.

This man was a doctor – a licensed M.D.;

But he couldn’t begin to convince me

That because yesterday was cool & today was hot.

That’s why my son should look like that.

We went to nutritionists & such with our son.

Always on the look-out for something to be done.

We tried several oils and diets galore

Anything different we hadn’t tried before.

Every time we tried something new, or when there was a change,

He would get somewhat better, but it was so strange –

After a while the eczema returned to his skin

And became just as bad as it ever had been.

I could go on and on, and write more and more

But I won’t do that – you’d find it a bore.

I’d like to end the poem, my friend,

But my son’s life with eczema has no end!

EA ADvocate, May 1992 (National Eczema Association newsletter)

Gitel Weber

Voices : Alan Ball, Masaya Nakatsu, Janine Schulter, Sylvia Ramos, Jean-Francois Stalder.

Many thanks to : National Eczema Association

Christine, Aurélie and the children of La Génolière Primary school, Le Pellerin, France. The illustrations are the result of a collaboration between OPENED and this primary school, the objective being to increase awareness among the children of the personal and social impact of Atopic Dermatitis and chronic disease in general.