May 2013 is the Month of the Brain. This is the occasion for all neurological disorders to champion their cause. Audrey Craven, the current President of the European Federation of Neurological Associations (EFNA), shares her experience of living with disabling migraine.

“I had been living with disabling migraine for many years before I founded the Migraine Association of Ireland (MAI). It affected me on two to three days of every week, but I never knew which days it was going to strike. Symptoms would include an intense throbbing headache, vomiting and diarrhea, sensitivity to light, sounds and smells – and stroke-like symptoms such as slurred speech, numbness and even fainting. This meant that I was unable to function and would be confined to a darkened room. I could not work, socialise, and adequately care for my three young children. The impact on my quality of life was immense. My mental wellbeing was suffering as I felt isolated and alone. People would dismiss it as ‘just a headache’ – not knowing that headache is just one of many symptoms.  And worst of all, no medication worked to cure or ease my symptoms.

Then, in the early 90’s a new form of migraine medications called ‘triptans’ came on the market. These revolutionised my life and allowed me to be well enough to found the Migraine Association and work, in a voluntary capacity, as a patient advocate.

Andrew Zammit McKeon is a young student diagnosed with diabetes. He is also member of the EPF Youth Group. On 8-11 July, he will have the occasion to put forward young patients’ expectations under the EMPATHY project’s seminar. He shares his experience as a young patient on our blog ahead of the event’s session “a day in patients’ shoes” and provides his opinion on two event’s focuses: data protection and discrimination.

“I was diagnosed with diabetes at a young age, just prior to my eighth birthday. My mother was the one who realised I was affected as she recognised the symptoms from my father’s diabetes.

My treatment consists of insulin injections and blood glucose monitoring. I was first terrified by the injection and finger pricking as I was very young and that my mother was doing it to me. I achieved to get over my fear at diabetes’ summer camp for children.

As from that time I adapted pretty well to living with diabetes. I think I grew faster than other youngsters and I learned to see life without sweets as something normal, rather than a punishment. 

Around the age of 10 or 11, I got used to diabetes and understood that it had little impact on my life. It’s like breathing: it’s there but you don’t pay attention to it. My attitude towards my condition has also been facilitated thanks to my friends as they did not pay attention to it, therefore why should I?

My position on the disclosure of personal data is linked to my own use of Social Media. While many young patients do use them extensively, I don’t. I personally do not want to post personal details of my life on a public forum. This affects my views on the disclosure of data as I believe that my medical data can be disclosed but that my personal details are nobody else’s business.

My experiences so far with ‘discrimination’ have been largely positive with friends, colleagues and superiors. They treat me equally but they just tend to be more caring, in preventing hypoglycemia for instance. However I do know other young people with diabetes who have been discriminated at work. I think we have to distinguish discrimination that can be justified i.e. for becoming a pilot with other types of discrimination such as jobs, insurance, loans, etc. that should be condemned.”