Idoia’s story

My name is Idoia.

I was born in Algorta near Bilbao in the Basque country. I have lived in Ireland for the last forty years with my husband and my son.

My Dad had very bad nosebleeds. They would happen spontaneously and as he grew older they became heavier and more frequent. When I say heavier I mean life conditioning. He gave up work. He stopped going out and socialising. And he was surrounded by towels. He had transfusions and iron infusions. Poor Dad was in his fifties and sixties and the hospital admissions were very frequent. He had his veins cauterised many times. But the worst thing is that he was never diagnosed with HHT.

It was a frustrating, upsetting and  debilitating thing to go through every day. Dad sadly died at seventy . My youngest brother, my son and I were already bleeders at this stage but not as bad as Dad had been.

My son as a child and as a teenager attended ENT consultants. He had his veins cauterised several times but he wasn’t diagnosed until he was in his twenties and he attended Dr Amin in Dublin.

I went to the appointment with him and Dr Amin diagnosed HHT in both of us. We were both sent to the Centre for HHT in Mercy University Hospital, Cork. We had all the tests done. Thankfully we don’t have AVMs.

We both had Sclerotherapy treatment in Madrid several times and it does help a lot. This process reduces the amount of blood and frequency of the epistaxis.

As well as the obvious impact nose bleeds have in my every day life, HHT has had an impact on other medical  issues. I had severe atrial fibrillation and I couldn’t be prescribed blood thinning medication despite the danger of stroke. I had a device implanted in the Mater Hospital, Dublin, called the Watchman. This device is inserted in the left appendage of the heart to minimise the risk of clot forming. I then had a pacemaker implanted.

I had a full hysterectomy at 42yrs. I didn’t know I had HHT. I had always had very severe and painful menstruations. Endometriosis was diagnosed and I had some complications due to HHT.

I have small AVMs on my finger tongue and face. The ones on my fingers have bled a lot. I had Sclerotherapy on one and the rest lasered.

It was a surprise to be diagnosed with HHT. I was heart broken for my son and very sad that my dear dad was never given an explanation for his suffering. I have researched in the family if any of my dad’s ancestors or siblings had epixtasis. It very much looks like the gene mutated first on him. I am very aware of HHT in my every day life not only when I have a nose bleed but also on the impact it has on other medical issues.

I also find it very expensive in Ireland to receive any treatment and it’s very frustrating to educate doctors during emergencies.

I find great support in the HHT Ireland and HHT España patient groups.

Idoia Dunbar

Wexford.