What is Lipoedema and how can it be managed?

June is Lipoedema Awareness Month, do you know what Lipoedema is? I have to be honest here and say that up until a few months ago I had no idea what it was. I met Tess Sanderson at a 4Network lunch and during our chat found out that she had been diagnosed with Lipoedema and has been trying to raise awareness now for the last 5 years and helps others with the same condition, currently working with the charity Lipoedema UK.

What is Lipoedema?

Teresa Sanderson

Lipoedema is a long term (chronic) condition where an abnormal build of body fat is symmetrically distributed beneath the skin affecting the buttocks, legs and sometimes later progresses to the arms. It doesn’t affect the hands and feet. When a person is affected by Lipoedema their body can look out of proportion so things like shopping for clothes can become very difficult and most sufferers have never owned a pair of boots for instance.

Relatively little research has been done until recently and the cause of the condition is unknown. Genetic research is currently ongoing and it is thought to be a genetic condition that is hereditary and can be triggered by hormones such as at the onset of puberty, pregnancy and menopause. The condition usually only affects women, although in rare cases it can also affect men. Many women are dismissed by the medical profession and misdiagnosed as obese or as having lymphoedema, believing that it is ‘their fault’. This was the case for Tess who was not diagnosed until she was 49 years old, which obviously affects mental and emotional health and self-confidence. Finding chairs you can sit in or flying is difficult due to ‘saddlebags’ that develop at the hip, late-stage ladies like Tess cannot sit on the floor or get in the bath.

Lipoedema Fat

Tess explained to me that the Lipoedema fat feels different to ‘normal’ fat, the skin is often ice-cold and bruises appear with no explanation; at a late stage, it feels like polystyrene balls under the skin or can be hard, rather than a soft squidgy mass. Pain is often felt throughout your life, getting worse as the limbs get bigger and making it difficult to move.

About Tess Sanderson

The first signs of Lipoedema began when Tess was just 8 years old. Over the space of a few months, her legs grew larger and larger. As you can imagine, with children being so cruel Tess was teased for being ‘fat’ and sadly Tess believed what was being said about her.

It was only 7 years ago that Tess was diagnosed with Lipoedema. At this time she went through a period of what she describes as grief which lasted 2 years when she realised that her life would never be quite how she had imagined. Now she wants to do all she can to help herself and help others with this chronic condition.

Can Lipoedema be managed?

Eating a non-inflammatory diet has helped Tess as well as following the NHS Eat Well diet and parts of the Keto diet. Whilst reducing calories will not help the reduction of the Lipoedema fat cells, it will help to keep the weight down on the non-affected areas of the body.

Low impact exercise such as swimming. moving in water and cycling can help to tone and strengthen your muscles whilst reducing the pressure on your knees and ankles. Tess wears compression stockings to help contain her lipoedema fat and enable her to continue to walk short distances.

Tess became frustrated when trying to do non-weight bearing exercises but knew she needed to do something. This was when she discovered Laughter Yoga and it has turned her life around.

Laughter Yoga

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After seeing an ad on Facebook for Laughter Yoga Tess became intrigued. She chatted to the course leader and decided to give it a go so she signed up for the course to become a Certified Laughter Yoga Leader. Tess has taken sessions at the Lipoedema UK annual conference over the last two years showing other ladies how it can help them to manage their symptoms, including pain. Now she runs weekly Laughter Yoga sessions herself as well as for corporate events, local health providers and support groups. You can find out more about her sessions on her Facebook page, In The Laughter Locker and her website In The Laughter Locker.

Some people wrongly assume that Laughter Yoga is all about being bendy and doing downward-facing dog-like in traditional yoga but it is actually very different, using yoga breathing and diaphragmatic breathing during the laughter, as well as movement, singing and meditation. It has physical benefits including better sleep, helps manage pain and weight, reduces stress, increases focus and concentration, promotes better heart and mental health and helps anxiety and mood. It is also great for the soul and self-esteem – and it is fun! In previous years Tess tried dieting but felt miserable and had very little success, since increasing the number of Laughter Yoga sessions she runs and eating the normal balanced diet she has lost 16kg.

Tess’s Advice if you believe you have Lipoedema

Tess suggests that you take it slow and don’t dive right into finding the next great miracle cure, sadly they don’t exist. Give yourself time to come to terms with your condition, read up on the condition from reputable sites like NHS and Lipoedema UK (www.lipoedema.co.uk) to get the facts. Speak to your GP and ask for a referral to the Lymphoedema Clinic in your area. Try different eating regimes and exercise to see what works for you to help manage the pain. Persevere with compression to find the right type for you. – everyone is slightly different and it may take time to find something that is right for you. Liposuction is available for some patients with Lipoedema but is not suitable for everyone and is not currently deemed a ‘cure’ – it is also not readily available on the NHS with funding being rarely approved, though Lipoedema UK is working to try and influence a change; Lipoedema is a lifelong condition which also requires lifestyle management. Staying positive helps Tess manage these debilitating symptoms.

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