'Am I going to be left to die?'

Anne MacMahon has a rare blood disorder which requires frequent blood transfusions. There is a drug treatment to contain the condition but she is not being given it

I WAS always on the go. I used to work in a factory and I have two kids who are grown up now.

Back in 2003, I started to get bruising on my skin. My GP sent me to hospital for blood and bone marrow tests and they thought there was a problem with my blood platelets.

This went on for years; I was in and out every six weeks, for more blood tests, but nothing was being done.

In 2007, I started to see blood in my urine – again there were further tests but nothing showed up. I was still working at this stage but I was feeling very tired and things were getting worse.

That Christmas I saw a different doctor, and he sent off samples to be tested for a rare blood disorder called paroxysmal nocturnal haemoglobinuria, or PNH.

The tests came back positive and I was diagnosed. I thought at last, now they know what is wrong with me, they can fix it.

At this stage I was getting really sick. This is because my red blood cells are shipped out of my body before they get a chance to do what they are supposed to do. That means I get very anaemic and I get very tired because of a lack of oxygen. My legs don’t work and I’ll be huffing and puffing. There are days when I have to go to bed in the middle of the day. It’s awful, you have no life at all, you just exist.

So within a few months I started on blood transfusions, that was the only thing they could do for me.

The first time I went for a transfusion I had gone down to eight in my blood count and you are not supposed to go below 10, so I was literally falling around the place.

Then I got three units of blood transfused and I didn’t know myself – I was bouncing around saying, why didn’t I get this years ago? I got 13 weeks out of that first transfusion.

Now, though, because my condition is getting worse, I am getting less of a time-span between transfusions; now, they last about six weeks.

And within that there will be two to three weeks where my blood count will be dropping and I just feel so sick and useless and tired. I just hang on until I go to 10 or under and then I’ll get a transfusion and will come back up.

I’m also on the blood-thinner Warfarin because of the condition so I am in and out of hospital frequently to have my blood monitored.

I had to give up my job in July last year. I am doing well if I can potter around the house at home and there are days when I can’t even cook a dinner for myself. And you never warm up – my body is always cold. So in the winter time it’s particularly hard, it’s just unreal.

I am very lucky to have friends who help me out. There are times when I am too sick to do anything, even to get to hospital on my own, and sometimes I move to a friend’s house when I am too tired and exhausted. They always look after me. Without those friends I wouldn’t be telling my story now.

I found out that a doctor at St James’s was involved with the clinical trials a few years ago of a drug to treat PNH.

Apparently this drug is amazing, it does the business and it would mean you are not depending on the transfusions and you would have a quality of life back.

I went to see that doctor last year and he wanted me to go on the drug but I think he is up against a brick wall. Apparently it costs €350,000 a year to go on it.

I wrote to the Minister myself and I got several politicians to write to her too. I got a letter back through a politician saying, “Thank you for your inquiries regarding the provision of medication for Ms MacMahon. This is a containment treatment and not a cure.”

Now that is an insult. I have friends who are diabetics and asthmatics and they are all on containment drugs. And my father was very sick at the age of 45 but because of containment drugs he lived to be 87 and died of old age. Who can put a price on my life and say we can’t give her this, it’s too expensive? Because of this, am I going to be left to die?

Also, in a couple of years’ time there could be a new breakthrough. But am I ever going to get the chance to see that, because I won’t be given the containment drug. The problem is there are only a few other people in the country with this condition. We are a minority group.

Are we going to be swept under the carpet because we are not out and about, shouting and marching up and down O’Connell Street?

Everything about this condition is frustrating and on top of that I know there’s a treatment there that has been tried and tested and works and I am not able to get it. It’s so wrong to refuse somebody treatment.