Donegal woman's revolutionary Amyloidosis treatment

Milford's Barbara McBride is only the fourth person in the Republic of Ireland to receive the revolutionary amyloidosis treatment, Patisiran.

Speaking to Donegal Live following Saturday's international amyloidosis conference 'Emerging from the Shadows', Barbara said she was “super excited” to be receiving her first infusion of Patisiran the following Monday in Tallaght Hospital. She was looking forward to “a good change” in her condition.

Barbara added: “The organisers of this event deserve great credit. It is unbelievable. The work they put in to together all these international speakers is incredible.”

Barbara's path to her amyloidosis diagnosis began when she had to receive an ankle replacement in the Beacon Hospital in Dublin.

She explained: “My blood pressure was high, which I put down to 'white coat syndrome'. However, I was referred to a cardiologist in Dublin.

“I was sent for an angiogram and near the end of the angiogram I had a heart attack. As a result, I got two stents in, one that day because they could not put any more dye in and one later on.

“When I got the stents in, I still felt there was something still not quite right. I was tired and exhausted and there were strange things going on in my heart. They then suggested I do rehab in Letterkenny. I was doing a stress test as part of that, I was only seconds into it, when they stopped it and said, 'Accident and Emergency for you.

Recommended Reading 

Hugely successful Amyloidosis conference

Historic international event held in Donegal

Amyloidosis 'Emerging from the Shadows

'An inspirational day' - Professor Julian Gillmore

"I was under the care of Dr Aleong, a cardiologist in Letterkenny University Hospital, who referred me to the Blackrock Clinic in Dublin for a cardiac MRI, which revealed I was in the advanced stages of cardiac amyloidosis,” said Barbara.

Amyloidosis is the name for the group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body.

Barbara was then referred to the Amyloidosis Centre in the Royal Free Hospital in London, where Professor Julian Gillmore prescribed Diflunisal, which stopped her neuropathy [the dysfunction of one or more nerves that results in numbness, tingling, muscle weakness and pain in the affected area].

“I was stamping my feet and rubbing my hands and going crazy with tingling, pins and needles,” said Barbara, who was then diagnosed with Hereditary ATTR amyloidosis.

“I was having an ultra sound of the heart one day, having been referred by Dr Aleong, when I met Dr David, the consultant cardiologist at Letterkenny University Hospital who subsequently took over the care of all the amyloidosis patients in the area.

“Dr David got us all on Tafamidis, a Pfizer drug, on compassionate grounds. I am still on it to this day. Tafamidis worked very well for me for the first 15 months but then it stopped being as effective, so Dr David put me forward for Patisiran.

“My first infusion of Patisiran will take place in Tallaght Hospital on Monday. It will take six hours because I have to have blood tests and an antibiotic. My next two infusions, which take place every three weeks, will also be administered in Tallaght but, after that, I will be able to receive the infusions at home.

“I am super excited and looking forward to a good change in my condition,” smiled Barbara.