Imagine having chronic swelling in your arms and/or legs for the rest of your life – this is the reality that a lot of women who have been diagnosed with lymphoedema live with every day.
Lymphoedema is a chronic progressive condition that causes swelling most commonly in the limbs because of “excessive retention of lymphatic fluid”, according to the Cancer Association of South Africa. In 2014, the organisation estimated that around 1.3 million South Africans had some form of the condition.
The condition is not yet curable; it can only be managed with vigorous diligence to treatment (which we’ll get to in a moment).
How does it work?
Academic medical centre Mayo Clinic explains that the lymphatic system is pivotal for maintaining a well-functioning and healthy body. Lymph fluid travels around your body collecting viruses and bacteria — these are carried by the lymphatic system through lymph vessels and, as the process continues, they are eventually flushed out of your body.
Lymphoedema happens when the lymph vessels become compromised and can no longer efficiently flush out the lymph fluid in specific areas of your body. These are the parts of the body that experience chronic swelling.
There are two types of lymphoedema: primary and secondary. Primary lymphoedema refers to the condition developing on its own, and secondary lymphoedema is when it’s caused by another condition. The primary type is a lot less common than the secondary type and the causes for each are slightly different.
So, what are the causes?
An essay by members of the Lymphoedema Association of South Africa (LAOSA) published in the Sabinet Journal outlines the causes for primary and secondary lymphoedema.
As mentioned, primary lymphoedema is quite rare and it’s an inherited condition. Here are the three main causes:
- Congenital (Milroy’s disease): This condition makes lymph nodes form abnormally and one can develop this from birth to two years old.
- Lymphoedema praecox (Meige’s disease): This condition can cause lymphoedema from puberty to 35 years old. It can also cause lymphoedema during pregnancy.
- Lymphoedema tarda: When lymphoedema develops after the age of 35.
Secondary lymphoedema, the most common type, happens because of another condition’s effect on your lymphatic channels. Here are the conditions/circumstances that can cause secondary lymphoedema:
- Surgery: Lymphoedema can develop if any lymph nodes or lymph vessels are removed or damaged during surgery. This often happens with breast cancer patients – lymph nodes sometimes need to be removed to see if the cancer has spread.
- Radiation therapy: Radiation therapy for cancer can scar and inflame the lymph nodes and lymph vessels, which can cause lymphoedema.
- Cancer: Lymphoedema can develop if cancer cells block lymphatic vessels.
- Filariasis: The Centers for Disease Control and Prevention explains that if a mosquito bites someone with lymphatic filariasis, microscopic worms from the infected person’s blood infect that mosquito. When that mosquito bites someone else, the worms go from the mosquito and enter the other person’s bloodstream and eventually travel to the lymph vessels. This invasion to the lymph vessels by the worms can cause lymphoedema.
What are the risk factors and preventative measures?
If you’re currently in treatment for cancer, or you’ve just beaten the disease, older age, excess weight and/or developing psoriatic arthritis could significantly increase your risk for developing lymphoedema.
If you’re about to get surgery for cancer, or you’ve already had it, there are a few preventative measures you can take to reduce your risk of developing lymphoedema, but these are only relevant if the surgery involved the lymph nodes or lymph vessels. You can find this out from your surgeon.
You can reduce your risk by avoiding any type of injury to the affected arm or leg; always making sure to rest your affected arm or leg as much as you can during recovery; keeping the affected arm or leg constantly elevated; avoiding clothes that are too tight; always keeping your affected limb clean, and checking the skin on your affected limb every day. If there are any abnormal changes, get in touch with your doctor. And lastly, never go without shoes or socks.
LOASA writes that the most effective treatment for this condition is raising awareness on risk reduction strategies. The same risk-reducing methods are also part of the management of the condition. Because there’s no cure, most of the treatment is centred around controlling the swelling and pain. LOASA offers some more methods for risk reduction:
- No drawing blood, vaccinations, acupuncture or taking blood pressure on the at-risk limbs.
- Avoid high-impact sports, carrying heavy items or prolonged repetitive movements.
- Exposure to heat from places like steam rooms, saunas or the sun should be avoided.
- When doing things like washing dishes or gardening, always wear protective gloves.
- Always wear compression garments when exercising and travelling long distances by plane or car.
- Engage in non-strenuous exercise focused on mild contractions of the arm or leg muscles.
“The gold standard for treatment of lymphoedema is complete decongestive therapy (CDT) and consists of manual lymph drainage; compression therapy (includes multi-layered lymphoedema bandaging and compression garments), home care, skincare and exercise.”
In severe cases of lymphoedema, doctors will often recommend surgery to reduce the swelling in your arm or leg.