I am French and came to Ireland in 2008. Since then I lived in Dublin.
I got primary lymphoedema on my left leg in September 2006. I was 31, had two children and two more after that. I was running every day at that time, I hurt my leg – not sure exactly what I had, but my leg stayed swollen after that.
I did various medical tests and primary lymphoedema was confirmed by a lymphatic scintigraphy a few weeks after that. I had never heard of it before and nobody in the family had been affected by it. Since then I have worn compression stockings each day, from the moment I get out bed to the time I go to sleep.
I tried different makes and strengths and finally what is working best for me is to have a long one with a short one above. I have also a cap for the toes, so three layers of stockings/socks.
In some ways I think I am lucky: so far, my lymphoedema is well managed and not too big. I am fit enough, exercise a bit, try to eat healthy. But I still find it’s a disabling condition.
First I really struggled: I was used to go barefoot, wear skirts and dresses in the summer, now I can’t deal with temperatures above 25 degrees. Also I found it very difficult to think it will never go, I used to love my legs! I struggle to find shoes that really suit.
I got my first cellulitis in 2012. I got one almost every year (in the summer) until 2017 when I got four in a row. I have to take a low dose of antibiotics for two years without knowing how things will go after that.
Although I wear my stocking all the time, small lymphatic vesicles appeared on the foot through the years, and are offering an open gate to infections. It’s worrying as I don’t know if I will be able to manage without antibiotics in the future.
Another struggle is the quality of public health care here in Ireland. In France, I could see a specialist very easily for free, there is a special hospital in Paris dealing only with Lymphoedema and a good network of specialists around the country. I could get manual lymphatic drainage for free 30 mins twice a week, and part of the cost of compression stocking was covered. Most of GPs would know what do to with cellulitis.
In Ireland, MLD costs €70 for one session and I haven’t met a GP with good knowledge of lymphoedema and cellulitis. I managed to keep benefiting from the French system for some years, but now I don’t have that anymore.
It took me seven months to see the specialist in St. James’s Hospital and I don’t know when I will see her again. I have appointments with the physiotherapist in hospital but only every three months.
I do enjoy living in Ireland for other reasons and really feels it is home, but I can’t help worrying about the future and how I will be able to afford treatment if I need more.
At the same time, when I hear stories of people with lymphoedema, I am grateful mine is not too bad, I didn’t have cancer, it is well managed and it doesn’t hurt.
I do think it’s important there is more awareness about the condition, especially among medical professionals and GPs – and I would love to see an improvement in access to free care.