Join us as we celebrate Rare Disease Day 2022

Mary FoxMary’s Story: “I was finally diagnosed with HHT in 2016 after 30 years of suffering with severe nosebleeds and its side effects. My nosebleeds started around 1988. I had my nose cauterized for the first time in 1990 and since then many times. In 2015 it was cauterized five times in one year. Nobody seemed to know what was wrong and it was very scary. Every time I went out socially I would go laden with tissues and a change of clothes and I could never wear white. There were times when it was so bad that A&E was the only option.

In 2015 I had an accident and during my recovery I asked my surgeon did he know anybody who could help me. Finally in 2016 I was put in touch with an ENT specialist who diagnosed HHT. My relief was immense to get a proper diagnosis. I was referred to Mercy Hospital in Cork where genetic tests and others were carried out. I was very low in iron and my haemoglobin was on the floor. My three children were tested and two of them have the condition and one of my grandchildren also has the gene. My daughter has an AVM on her liver and my son has one on his lung. Both will be monitored for the rest of their lives.

The good news is I have had my nose lasered twice and I take iron supplements which has brought my iron and haemoglobin levels up to almost normal levels. Also the nosebleeds have greatly reduced ,so all in all a very positive outcome for me.

I am not out of the woods but the improvement is great and knowing about my condition is a positive thing in every respect.

I am involved with HHT Ireland – a patient support group and having that support is of great benefit to me.”