Lymphoedema: 'I Risked My Mobility To Start a Family'

After being diagnosed with Lymphoedema, Aussie mum Madeleine spent years rebuilding her fitness and confidence. When she became pregnant, she feared she would lose her mobility all over again – but by keeping active during pregnancy she became stronger than ever. “I always wanted a big family and becoming a mother meant so much to me. I’m so proud that by keeping active and with my supportive partner, I was able to manage my illness throughout pregnancy and birth – I now have my adorable baby boy, and we’re already planning for another,” said Madeleine.

 

When she was 14, Madeleine suffered a sports injury to her leg, leaving it so swollen she was unable to bend her knee or wear shoes. She was diagnosed with Lymphoedema, a condition caused by damage in the lymphatic system, resulting in an excess build-up of fluid.

“Lymphedema is a condition characterised by collection of fluid within soft tissues of the body. Those tissues might be the skin, muscles or any area of the body, and it’s something that occurs when a system of vessels called the lymphatics are damaged or blocked,” explains Dr Kieran Kennedy. “Any kind of damage to the lymphatic vessels can thus lead to a blockage in that fluid draining – hence Lymphedema represents collection of this fluid (lymph) in areas of the body where the lymphatic system has taken a hit. Many causes of Lymphedema exist, but common ones include injury to the arms and legs that damage vessels or surgeries (especially Lymph Node removal for cancer clearance) that similarly lead to a block.”

“When I was pregnant, I wished I’d been able to read other people’s experiences. You read about ‘cankles’ and oedema in pregnancy, but I never heard about people with my pre-existing condition and how it affected them,” said Madeleine.

“Lymphoedema isn’t a common condition, most people I speak to or even my friends, don’t quite have an understanding of how much it affects your life. The constant state of discomfort you’re in or how it makes day-to-day activities hard – you can’t concentrate as you can’t sit at your desk for long, but you can’t stand all day either”.

Unable to find answers or treatment throughout her teens, Madeleine was left feeling like she wasn’t able-bodied, and couldn’t wear, or do, what other girls her age could. For years she was left to just ‘deal with’ her condition, until she found a clinic able to perform liposuction on the hardened tissue, from the years of untreated excess fluid. And for the first time since being a teenager, Madeleine began regaining confidence.

With the new mobility and confidence surgery had given her, Madeleine started to manage her Lymphoedema by exercising and keeping on top of her health. Last year, when she became pregnant with her first child, she knew her mobility could be at risk with her condition.

“My mum remembers the doctors saying I probably shouldn’t get pregnant, because it could exacerbate my condition too much,” said Madeleine.

“But I got motivation from how much better moving my body and exercising made me feel. This new appreciation and love for this body of mine that I used to resent, has healed me and I feel stronger than I ever have”.

Below, Dr Kennedy breaks down the condition.

What are the symptoms of Lymphoedema?

“Symptoms of Lymphedema can have a major impact on someone’s quality of life, but they come with different severities depending on how badly vessels are damaged and where that damage occurs.

“Collecting of fluids in areas like the arms, legs or abdomen can cause swelling, changes to appearance or heavy limbs. Pain, skin changes and issues with sensation might arise too.

“Mentally, Lymphedema can be really difficult for patients as well. Collections of fluid and swelling of areas of the body can quickly impact our body image and sense of self. It’s not uncommon for patients to experience low mood, anxiety and struggles with self worth or acceptance when their body suddenly changes or signs become noticeable out in public.”

What about treatment?

“While there’s not currently a cure for lymphedema, a number of treatments can improve fluid drainage and help with symptoms. Light exercise of the impacted area and elevation of an affected limb can help. More specialised treatments include compression garments and massage geared toward helping lymphatic fluid drain.

“It’s never ever a weakness to feel the mental impacts of a condition like lymphedema, so counselling and psychology support when it comes to body image, impacts on our life and symptoms can go a long way to helping too.”

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