`Two or three times I've been out shopping when I've seen women with enormous legs and feet and I have been unable to resist the urge to go up to them and say quietly, `excuse me, but do you realise that you may have lympho edema?' Each time, the women have told me where to get off, unfortunately. Some may say I have no right to approach people like that, but I just feel so sorry for them because lymphoedema is a condition that is not being diagnosed and treated in this country as often as it should be.
I was nine stone when I got married in 1963 (to Fintan, a now-retired member of the Garda Siochana). Then I proceeded to have five children by the time I was 29 years old. I was 10 1/2 stone after my last child, Dermot, was born. Seven weeks later, I had to have surgery for gallstones and after that my weight suddenly escalated. At 31, I was 16 stone. I was 18 stone in my late 30s and I was 24 stone by my late 40s.
My legs and feet were so massive by that time that I could not see my toes because my instep was so swollen. I could not wear shoes. I had to buy soft, black leather men's shoes and cut the sides out of them and tie them around the soles of my feet with football shoe-laces.
I went from doctor to doctor, and from hospital to hospital. In one hospital, I was treated for obesity. In another, I was used as a guinea pig for a controlled medical trial of weight loss drugs. At one stage, I spent 16 weeks undergoing an experiment which was never explained to me. By that time, I weighed 350 pounds. No one ever diagnosed lymphoedema. At the age of 47, I went to a GP who told me that because I was a new patient, he would have to examine me from head to toe. It was the first time any doctor had looked below my neck in years. After examining me, he said: `You have lymphoedema, there is no cure and I don't know where to send you for treatment.'
Eventually he referred me to a specialist who refused to let me stand on his weighing scales because he said I was too heavy. I remember that he told me: `You are seriously overweight. Do you know what 800 calories looks like? People like you don't like to hear the truth.' I left his office in tears.
I never felt depressed; the worst thing I experienced was feeling the humiliation of people's insults and jokes about my weight. I became so heavy that I was unable to stand or walk for two years. The pain in my legs was dreadful. All the weight was below my midriff, around my bottom, thighs and legs.
I was sitting in my GP's waiting room, when the pages of a Sunday newspaper magazine opened before me - just like that. I looked and was instantly drawn to the photo of a man with two big, fat legs, just like mine. The caption said: If you have legs like this, call the Royal Marsden Hospital (in London).
I showed the article to my GP, who said: `Right, go ahead.' I first went to the Marsden in 1992 as a private patient when I was 50 years old. (There was no subsidy because the health board did not recognise my condition.) My doctor at the Marsden was a specialist in lymphoedema, who told me I had been born with primary lymphoedema, but that it had not revealed itself until adulthood. At the Marsden, I saw babies with their legs and feet all swollen because they had been born with the condition. Since my diagnosis, both my sisters have also learned they have primary lymphoedema. My doctor told me that the condition is hereditary and probably caused by the lack of a particular protein in the blood. (Lymphoedema is a different condition from oedema, which is excess fluid retention. In lymphoedema, there is a build-up of lymph, which is a colourless fluid forming in the tissues of the body and normally draining back into the blood circulation, through a network of vessels and nodes called the lymphatic system. Lymph nodes act as filter stations and play an important part in the body's defence against infection, by removing excess protein, dead or abnormal cells and bacteria. If drainage routes are blocked or damaged, lymph fluid accumulates in surrounding tissues, causing swelling. Stagnant lymph forms a solid component, making the control of swelling more difficult.)
My treatment at the Marsden was three weeks of intensive bandaging. I was wrapped up like the Michelin man, day and night. When I left the hospital, I bought my first pair of shoes for many years. I could walk and my legs were down to half their size. Today I can wear high-heeled shoes and I'm down to 18 stone. I am still too heavy, but it has taken six years to get down to this weight. The best way to lose weight is by walking quickly, but walking is not good for lymphoedema because you are heating the blood.
There is no health professional in this country that I know of who is trained in the special bandaging used to treat lymphoedema. I taught my children to bandage my legs, but they've all gone away and got married. Because it's the two legs and because I am big, I can't do the bandaging myself. Although it would be difficult anyway because it's like doing your own hair without being able to see the back of your head.
Every day before I get out of bed in the morning, while I am still lying down, I have to pull on support tights because the minute I stand, the fluid heads for my legs and feet. But what I and my friends in the Irish Lymphoedema Support Network would really like, is to have someone in the Republic with the skills to do the bandaging, for both primary and secondary lymphoedema. Most of our members are breast-cancer patients who have swollen arms as a result of having lymph nodes removed during breast-cancer surgery. They may have a normal-sized body, with one swollen arm, and so they have to buy huge cardigans to cover the one arm, while the other half of the cardigan is falling off the other arm. It is very distressing for them.
The need for treatment is not a matter of vanity. The swelling caused by lymphoedema is very painful and can lead to terrible infections. I still travel to the Marsden for treatment because none is available in the Republic. Yet the treatment is so simple - there are no injections or tablets, just bandaging. Twenty minutes and you have two legs done. Because this is not available, there are people trapped in their homes because they cannot walk.
There will be a lymphoedema open day at the Irish Cancer Society offices at Northumberland Road, Dublin 4 on April 17th, 12-3 p.m. Members free, non-members £5.
The Irish Lymphoedema Sup- port Network helpline telephone numbers are: Mary Keegan 045- 868386; Helen Shine 01-6282414 (evenings); Thelma Bradley 01- 8339306 (evenings) and Margaret Morgan O'Leary 0503-61160.
In conversation with Kathryn Holmquist