Health Stories

I lost my legs to lipoedema

When Nola reached puberty her legs suddenly ballooned
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Nola Young, 57, Doreen, Vic

Walking into the store, there was a display of shorts.

No way I’m wearing those, I thought, picking a long skirt from the rack instead.

My legs hadn’t been seen in public since I was 14.

When I reached puberty, they suddenly ballooned into a tube-like shape, straight down from my hips to ankles without any curves.

They felt swollen and sore to the touch, too.

I asked my GP if something was wrong.

‘It’s nothing a good diet and exercise won’t fix,’ the doctor said, implying I was simply overweight.

But I’d always been active and sporty at school.

While my top half was slim, it was just my legs that were large.

It didn’t make sense.

My legs were painful and swollen

I searched desperately for answers but it wasn’t until I was 48 that a specialist finally diagnosed me with lipoedema.

‘It’s a chronic disorder that leads to the build up of fat in the legs and thighs,’ he explained.

I was so relieved to have an answer.

Sadly there’s no cure but it can be managed.

Now I wear compression stockings that massage my legs, do hydrotherapy, follow a careful diet and walk five kilometres a day.

My husband Alan and me

By the time I was diagnosed, my lipoedema had reached stage-four, the most advanced phase.

It’s contributed to the arthritis in my joints and affected my walk and balance.

If I’d been diagnosed earlier, I could’ve saved myself years of pain and heartache.

Now I’m sharing my story to raise awareness of the disorder so others don’t have to suffer like I did.

I’m president of the Lipoedema Australia Support Society and am working to support other women like me.

Find out more at www.lass.org.au

My portrait, taken as part of the ‘A wish for lipoedema’ project (Credit: Judy Hudson)

Lipoedema

– Lipoedema, also known as painful fat syndrome, is a chronic genetic disorder that leads to the abnormal build-up of fat cells.

– It most commonly develops in the legs, thighs and buttocks.

– The condition occurs almost exclusively in women, although there have been rare cases reported in men.

– An estimated 11 per cent of women could have lipoedema.

This story was originally published in that’s life! Issue 34, August 27, 2015.

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