Is one sleeve of your shirt fitting and the other not? Do you have to buy jeans that are too big because one leg has filled up with fluid? That’s the reality for people with the chronic condition known as lymphoedema, where the body’s drainage system isn’t working properly.
Sasha Roche Kelly saw the need for more trained manual lymphatic drainage (MLD) therapists when she was working as an oncology nurse – and also when a friend developed it.
“I was used to seeing lymphoedema in the oncology setting but I felt that it was an area that was being overlooked,” she says. “It is poorly diagnosed and understood. There aren’t enough therapists, either, so people may not be able to access treatment for this condition easily.
“The HSE provides some level of treatment but it’s not the same across the country,” she continues. “Yes, some of the cancer support centres provide MLD therapy, but that can be limited to the amount they can fund. Apart from that, people have to pay for it and the financial aspect can, therefore, be difficult for many.”
She explains that lymphoedema (lim-fo-dee-ma) is chronic swelling caused by a build-up of fluid in the body’s tissues. It happens when the one-way-drainage lymphatic system isn’t working properly.
“The lymphatic system carries debris away from the system,” she says. “It’s like the cleansing component of the body and an important part of the immune system, as well, so if it is not working properly in that area, toxins can build and metabolic rate can drop so that’s not going to help with healing, for example.
“It’s like a very delicate web of vessels under the skin,” she continues. “When they are not working, protein-rich fluid builds up in the tissues so in the early stages of the condition - stage one - we find that the swelling can go down overnight as everything is able to go back into the system, but then, as soon as the person stands up, the swelling starts again.”
Stage two is when the swelling doesn’t reduce overnight and stage three involves skin changes, hardening of the skin and heaviness in arms and legs.
“It’s very irritating for people,” she says. “Getting clothes to fit is difficult as they are constantly having to dress for that limb. They mightn’t be able to wear wedding rings or watches and they may have tingling sensations under their arm. It can be difficult for people to describe how it feels, exactly, but damage will have been done to nerve endings during surgery and they will have scarring as well.”
Lymphoedema is a lifelong condition, the Wexford based therapist says.
“We are at lifelong risk of developing it if there has been some disruption to the lymphatic system. Radiation increases the risk also. It is not curable, unfortunately, so it’s what’s called a chronic condition.”
Two types – primary and secondary
She points out that there are two types of lymphoedema – primary and secondary.
“Primary involves a faulty gene, which leads to the lymphatic system not developing properly. You can be born with it, it can run in the family or it can be a once-off. It can also be linked to some syndromes.
Secondary lymphoedema can be caused by damage to the lymphatic system, so things like cancer treatment can cause it, but also injury, infection, inflammation or lack of movement.
Our body is designed to support our lymphatic system because it doesn’t have its own pump so, with age, we find we can have swelling due to the lymphatic system not working to its full capacity,” she explains.
It could be caused by something as simple as a bang on the leg.
“Older people might also have an ulcer and swelling on top of it where it is hard to heal the wound and the lymphatic system is damaged.”
MLD is the gold standard treatment
Sasha is a member of the MLD Ireland, the governing body for MLD therapists. Its website MLDIreland.com provides a list of registered therapists nationwide.
“The gold standard treatment we provide is manual lymph drainage,” she says. “It is a gentle skin technique that stimulates the lymphatic system to drain which, in turn, reduces swelling and symptoms.”
Some people might need to combine compression therapy with MLD.
“That means multi-layered bandaging* of the affected limb after each MLD session,” she explains. “The idea is that we bring down the volume of the limb as much as possible and then we fit people for compression (bandages) afterwards for the maintenance phase going forward.”
MLD therapists also educate clients about skin care. “We would do that so they avoid injuries to their skin because, again, this can be a risk for lymphoedema to worsen,” Sasha says. “We also advocate exercise, elevation of the limb, healthy lifestyle, keeping down BMI, healthy diet and deep breathing as it’s an element designed to help our lymphatic system.”
“That said, no two individuals are the same so treatment is tailored to the person’s needs.”
How long does treatment last?
This depends on what stage of condition the patient is in – one, two or three, she advises.
“It’s a lifelong condition, so you need a treatment plan that’s tailor made for you. It can get worse and this is where the education mentioned above comes in. It’s not to scare people, but sometimes things can happen and you can get worse even though you’re doing everything you’re supposed to.
“It’s really about people knowing as much as possible about their risk factors and knowing how to reduce those factors so that they reduce the chance of their lymphoedema getting worse. Knowing all this can help you live with it.”
Cancer patients can find it a particular struggle after going through lengthy treatment, she adds.
“A woman here yesterday said that it was nearly worse than the cancer diagnosis and treatment. People have come through the treatment but when they get the diagnosis of lymphoedema it’s a constant reminder of what they’ve been through.”
Quality of life is also an issue. “Movement might be restricted, the arm might be heavy, they mightn’t be able to do things they were able to do – bring in shopping or get coal – but also their clothes won’t fit so there’s the psychological aspect, their body image,” Sasha explains. “Everyone wants to return to a level of normality, to fit in. Often it can also be difficult to talk about sexuality. How do you get close to your partner if one limb is bigger than another or you’re wearing a compression garment? It’s all those things that we don’t always talk to people about in relation to survivorship after any event, let alone cancer.”
Of course, many people try to be positive.
“They are glad to be alive and they feel like they are complaining if they have to wear bigger sized clothes,” Sasha says. “People close to them often don’t want to discuss it either, because they may be scared of all the talk of cancer starting again. Lymphoedema has a huge impact on how you feel about yourself and can affect relationships but when you get the right treatment and right intervention it can make a huge difference.”
Lymphoedema Ireland is the national support organisation for those with the condition. Sasha recommends that people join it.
“It is very helpful for getting tips from people who are in the same boat, so to speak, like ‘Where did you get those shoes’, etc.”
She points out that a lot of research related to lymphoedema is going on at present and several trials for drugs that may help in the future but at the moment MLD or manual lymphatic drainage is the gold standard treatment for this chronic condition.
Lymphoedema Ireland is a volunteer network which offers support, help and information to anyone in Ireland affected with Lymphoedema. Founded in 1995 it was previously known as Irish Lymphoedema Support Network.
The organisation’s activities are organised and managed by a small committee of volunteers who dedicate their time and effort to advocate and respond to the needs of its members.
Membership is open to anyone who suffers from lymphoedema and lipoedema young and old, their families and friends together with those with an interest in lymphoedema and lipoedema.
The membership charge is €20 payable each January. All members will be circulated regarding the activities of the organisation.
If you would like to find out more information or get involved with the work of the committee please contact Lymphoedema Ireland via the following platforms:
*Compression therapy – the specific bandages are applied to conform exactly to the patient’s tissues and are reapplied on a daily basis. They are short stretch bandages that resist muscle contraction and are applied with comfortable padding underneath. The bandages help to maintain the reductions achieve with MLD and may even cause further reduction.