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A grandmother from Cheadle is leading a call for increased awareness of condition lymphoedema, as part of UK-wide National Lymphoedema Awareness Week (6-10 March).
Food bank volunteer Doreen Buckley, 72, who has suffered with the chronic condition since she was 30, wants both the public and healthcare professionals to understand more about the side effects of lymphoedema — which can make sufferer’s legs swell to treble their normal size — after battling more than 40 years of misdiagnosis from doctors.
Buckley visited a number of medics who insisted she was simply overweight, rather than recognising the impaired flow of her lymphatic system, which was leaving her unable to fit into many of her clothes.
The lymphatic system is a network of channels and glands throughout the body that help fight infection and remove excess fluid. Crucially, untreated cases of lymphoedema can get much worse, rendering the most afflicted patients near-immobile.
With no one able to successfully diagnose her condition, hew own battle with lymphoedema got far worse, to the point where she was denied unrelated knee surgery until she “lost weight”.
She reveals the pressures she felt over that time: “That period was so frustrating. I’d read up on lymphoedema symptoms and everything fit — from the swelling to the random weight gain. People know their own bodies, and I knew what I was experiencing was bigger than just a weight issue.
“On the advice of the doctors I tried losing weight anyway. I found I became trimmer in other areas of my body, but my legs were getting bigger than ever.
“After eight years of visiting various specialists I gave in and finally went to see a private consultant. When I walked in the surgery he told me he was expecting to meet a bigger lady because of the weight listed in my medical notes, but he was surprised to find I was not a big lady at all!
“Half an hour later he had officially diagnosed me with lymphoedema. I was a mixed bag of emotions — the relief was just incredible.”
Previously Buckley enjoyed a wide range of hobbies. She regularly attended the gym and aqua classes with friends, and loved taking her dogs Columbus and Suki, both Airedales, out for a walk.
At times she was unable to do the things she loved to do, but has since found different ways to manage her condition.
She said: “Even after diagnosis, I was really exasperated by my ‘bad days’ and the things they would stop me doing. I was wearing traditional stockings, which helped, but I still found at times I could put on and then lose up to half a stone on my legs in a day. It was so unpredictable.
“Last year however I attended an exhibition in Manchester and heard about home compression therapies. I started using a home machine called LymphAssist to help manage the swelling.
“It was pleasant… it’s like a giant blood pressure cuff that inflates and deflates really softly over my leg. Now though I’m really used to it, I tend to just stick it on when I’m watching the news and A Place to Call Home in the evening!
“Home treatment is making a huge difference to the swelling, and in parts my legs are eight centimetres slimmer than they ever were with bandages.
“I’m finding I get out and about to see my friends more too. We’ve even booked a holiday to Majorca for August!
“Flying can be a real issue when you’ve got lymphoedema because of the cabin air pressure, so I would have never have even dreamt of doing this with them before. But between achieving diagnosis and my home compression machine, I’m starting to think anything is possible! A cruise is next on my list!”
Wayne Harris, product manager at Huntleigh Diagnostics, the company behind the LymphAssist Homecare machine, says misdiagnosis and ineffective treatment methods can have a huge effect on the quality of life of the patients he meets.
He said: “Lymphoedema cases in the UK are growing. It is a condition that more and more professionals are beginning to understand but there is still a lot that could be done to educate people on best ways of managing swelling.
“We find that Intermittent Pneumatic Compression (IPC) systems such as Lymph Assist, which rely on sequential stimulation of the lymphatic system, can be the difference between someone being stuck in the house with intense swelling, or out and about living their lives.
“My message to anyone suffering severe swelling in the legs or arms would be to read up on lymphoedema and talk to their clinician, particularly those patients who have undergone treatment for cancer, as they can be at highest risk of developing the condition.
“Losing weight alone is not enough, and bandage and massage therapies, though perfectly sufficient for some, can be uncomfortable and unsuccessful for others.
“We’ve got a long way to go but stories like Doreen’s provide hope that lymphoedema sufferers can manage their side effects and live relatively normal lives.”