DOCTORS REPEATEDLY TOLD that I was very overweight and needed to make lifestyle changes.
I had been put on numerous different diets since I was 14 years old and I did lots of exercise - I was walking, swimming and going to the gym.
I had been to GP’s, hospital appointments, for a stress test and to a dietician.
But I was still unexplainedly, getting ‘bigger’.
I just kept gaining weight and no-one would believe me that something beyond diet and exercise wasn’t right.
I became breathless easily and I had heavy-dead legs. A simple knock to my legs would send pain shooting through me and they would bruise very easily.
Thankfully last year when attending a physio, she asked me to make two fists. She measured my arms which confirmed that my left arm was inches bigger than my dominant, right arm.
After further investigation, she said I had secondary lymphoedema in my left arm and would need massage therapy to relieve pain, pressure and fluid from the arm.
At the end of my consultation, I asked her whether that might be the cause of my big heavy legs too? She examined them and diagnosed primary lymphoedema in both legs.
I wasn’t overweight I had a disease that affects the lymphatic system, I was amazed. I felt like crying, but at least I finally knew what was wrong.
Lymphoedema involves painful swelling of the limbs, mainly the arms and legs and occurs when the lymphatic system isn’t working properly.
Lack of treatment can lead to increased swelling and pain, irreversible damage to the body’s drainage system, recurrent infections, the inability to work and a dramatically reduced quality of life.
There are two types: primary lymphoedema is a genetic condition while secondary lymphoedema develops because of damage to the drainage system caused by radiotherapy, advanced cancer, deep vein thrombosis, cellulitis, paralysis or obesity.
Many cases occur following breast cancer treatment.
I have now been having some treatment since September 2018 on my left arm and both my legs. The fluid has reduced a bit. Compression stockings and a sleeve are helping to keep it under control.
Unfortunately, this year I also found out that I have secondary lymphoedema in my other arm – now meaning that all four limbs are affected.
I have been told that I will need ongoing sessions on each of my affected limbs for the rest of my life. This is hard to take in and deal with.
Getting dressed in the mornings is tough. It takes around 30 minutes to get the compression garments on. I am sick a lot, have swelling, extreme fatigue and get very cold.
I support the work of Lymphoedema Ireland which advocates for better services for patients like me. We need local services to be made available for lymphoedema patients.
Lymphodema Ireland has estimated that 15,000 hospital bed nights and €13m in savings could be achieved through developing dedicated localised services for lymphoedema.
Raising greater understand and awareness of this condition is so important – how many other young people are currently being told by doctors they are overweight when in fact they may have lymphoedema?
Through early detection, extreme swelling can be controlled and reduced, infection prevented and movement improved.
The first-ever national model of care for lymphoedema was agreed by the HSE last month – and so we are awaiting the detail of how and when it will be rolled out.
I know that making treatments available locally will avoid problems escalating and unnecessary hospital admissions.
Living with lymphoedema has a massive impact on my life and every single decision has to be made around it. However, my challenges would not have been as severe if I had been diagnosed earlier.
My wish is that future patients can find out if they have the condition earlier than me – and that we can treat it effectively through services and expertise available locally.
The early warning signs of lymphoedema are:
Andrea Quigley is a lymphoedema patient and advocate for improved patient services.
Lymphoedema Ireland is a voluntary patient group that provides information, a telephone helpline, an online discussion forum.
Their annual open day is in Dublin this Saturday, 30 March.
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