Support Becca & Save her Mobility

We decided to start this GoFundMe because a dear friend, Becca, has recently been diagnosed with two awful diseases; lipoedema and lymphoedema. She is fighting a battle that no one should have to fight at 34 – she is fighting to keep her mobility and stay out of a wheelchair.

Becca lights up all of our days and every room she walks into. She’s so thoughtful. She’s always there for everyone else – bubbly and beautiful, inside and out. In light of her diagnoses, she has set up social media accounts to raise awareness, in the hope that no other woman or girl has to go through this. She is truly incredible.

When I heard about what she was facing, it felt like it was Becca’s turn to get the help she so freely gives out to everyone else.

Becca has lipoedema all across her body – everywhere except head, hands and feet – and lymphoedema in both of her legs. These conditions have a severe impact on quality of life as they progress. They cause a great deal of tenderness and heaviness in the impacted areas, and she lives in an almost permanent state of pain and exhaustion.

Lipoedema has been developing since Becca was 11 and is now at an advanced stage (stage 3 of 4), and fibrosis has unfortunately spread all across her body.

She developed lymphoedema aged 16 after being in intensive care. This condition is awful in its own right, but is also accelerating the fibrosis. Despite going to the doctor about her symptoms many times over the last 15+ years since she was in her late teens, neither of these conditions were ever caught.

Becca found out about lipoedema by a chance Instagram post, and for the first time in her life saw bodies that looked like hers. At just 34, she is already struggling to stand or walk. Without treatment, Becca has been told she will need a wheelchair within a few years.

Surgery is only palliative, there is no cure for lipoedema. It is a lifelong condition that will need managing, but surgery can preserve her mobility. Mental health issues go hand in hand with these conditions, a body that is seemingly out of control, painful, shattered and getting bigger and more disfigured no matter what you try.

Becca’s own struggles with this left her suicidal, yet still her GP was dismissive. Disordered eating is also something that Becca has battled with as she fought to reduce the size of her diseased, fibrotic and swollen body.

Lipoedema especially is a little-known, progressive disease. Because awareness is so low – both from GPs and the general public – there are no care provisions or pathways on the NHS. Surgery is only covered on the NHS in a handful of rare circumstances where sufferers have become completely disabled and have been wheelchair bound for years.

Self-funded private treatment is now the only option. There is more information below on the conditions and a breakdown of the costs.

It's not right that lipoedema takes so much. It brings with it a life of pain and exhaustion, steals their mobility and much of their self-worth. In Becca’s case it’s left her unable to do the most daily basic tasks and she spends her time outside of work sleeping and trying to recover so she can go to work again the next day.

It isn’t right that it should also take her future from her and spiral her into enormous debt too.

Becca has turned her diagnosis into a positive, choosing to share her story online and raise awareness about signs and symptoms to look out for, to help people identify lipoedema in themselves and loved ones.

In just a few months of setting up her social accounts, over 100 women have contacted her to say they think they may have the condition as a result of seeing her videos. She has met with her MP who has promised to help drive change and she is meeting with Andy Burnham in the hopes that his platform can help to increase awareness.

She has inspired several women to also reach out to their MPs, sharing the information resources she has created. She spoke at an awareness event in Manchester in the summer and has more planned – and is hoping to combine forces with charities Talk Lipoedema and Lipoedema UK to drive further awareness.

There are a few surgeons in the UK who specialise in lipoedema, but will not operate on someone who also has lymphoedema because it presents a much greater risk and is more complex. Because of this, Becca is going to Germany for her treatments and will be operated on by a surgeon who is one of the leaders in this field.

We have started this GoFundMe account to ease the burden on Becca, as well as her mum and stepdad, Carol and Richard. Over the months and years ahead, they will need to be at countless doctor appointments, hospital stays and surgeries.

As you can imagine, the cost is astronomical.

This fundraiser will enable Becca and her family to concentrate on Becca’s rest and recovery. The current target will help to cover some of the surgeries, as well as travel to Germany. If we achieve this goal we will increase the target so that she is able to get all of the surgery she requires. They can’t afford the surgeries without our help.

From the bottom of our hearts, we humbly ask that as well as if you are able to give, that you also share this link with friends and family. Every donation is HUGELY appreciated, no matter how small.

Even if you can’t donate, just being aware of lipoedema and helping to spot it in your friends or loved ones would be a great outcome. It is a genetic condition and even though it only affects women, men can carry the gene and still pass it to their daughters. Although the disease can’t be reversed, its progress can be slowed down, or even halted, the earlier it is found.

Please visit https://lipoedema.co.uk/ for more information.

Please HELP US as we fight to help Becca keep her mobility and regain her quality of life.

1) GIVE whatever you can. No donation is too small (tax-deductible)

2) SHARE on social media #beatitlikebecca

3) FOLLOW Becca’s journey to raise awareness of this condition on social media. You might be able to spot it in someone you know or even yourself tiktok.com/@the_chronic_connection or instagram.com/the_chronic_connection

Thank you for your support!

Claire

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What is lipoedema?

Lipoedema is a chronic, connective adipose tissue disorder that almost exclusively affects women. It is characterised by a disproportionate distribution and build-up of abnormal fat cells that become diseased and not only swell, but also become fibrotic. This permanent scar tissue within the cells is what makes living with lipoedema so challenging and so harmful.

Statistics vary, but somewhere between 1% and 10% of women have lipoedema. Yet only 5% of GPs know about it. It’s a disease that affects women and is triggered by hormonal change during puberty (like Becca), pregnancy or menopause. Because so little is known about it in the UK, Becca’s GP didn’t even know who to refer her to. Months after her private diagnosis, he still doesn’t!

Had it been caught earlier, Becca would likely not need anywhere near as many surgeries, if any at all. Please spread awareness about this condition so that more women and girls can find out early and tackle this disease head on.

What is lymphoedema?

Lymphoedema is a condition caused by faulty genes that affect the development of the lymphatic system. It can develop at any age, but for Becca was triggered at age 16 following an illness that left her in intensive care.

Lymphoedema causes severe swelling. Becca has this in both legs. Not only does she have fewer lymphatic pathways than a healthy person – which means her body isn’t able to drain lymphatic fluid properly – but her lymphatic pathways also leak. This means she has a build-up of lymphatic fluid and metabolic waste. Her legs have been slowly expanding with this since she was a teenager.

The worse the lymphoedema gets, the more it impacts the lipoedema. This is because the accumulation of lymphatic waste can’t drain properly, inflaming and degrading adipose tissue. Over time, this tissue is repaired by fibrous scar tissue and leads to further fibrosis.

Conservative treatments (Manual lymphatic drainage massage (MLD), compression garments) can help to slow the progression of the disease, but surgery is the only way to remove the diseased fibrotic tissue and lymphatic fluid waste. These are lifelong conditions, so she will always need to have MLD and wear compression garments even after surgery.

We’re raising funds to help towards Becca’s treatment:

THE BIGGIES…