Solutions Summit

UCB/Pharma listens to sufferers

Dear Members,
A few weeks ago I was invited to attend a Patient Solutions Summit sponsored by UCB/Pharma. I was invited to attend as Beverley Finn "Patient" not as a representative of RLS-UK/ESA.
There were many people from all over Europe invited to attend all with different conditions and mixed walks of life.
I met with Freeha, who works for UCB, at St. Pancras station. Also travelling with us was Nick and we were travelling by Eurostar with Brussels as our destination.
We were escorted to our hotel on arrival in Brussels where I was about to meet many brave and inspiring people, one of which was Nick. Despite personal anguish in his life due to the sad loss of his dear wife only a few months before, Nick showed such amazing braveness. He suffers with Rheumatoid Arthritis, or R/A for short, I soon learnt. He had never travelled on his own before and when we all met at St. Pancras he was given a seat on Eurostar 13 carriages away from myself and Freeha. He came through the journey on his own with a smile.
My story today is to highlight braveness and Nick displayed that despite his R/A and his emotions he was such good company and I am sure he bought pleasure to each person that he met in Brussels with his wit and personality.
Another brave person I met was "Alan" a retired teacher from Wales who suffers with Parkinson Disease.
This was a Global meeting of people who suffer with Epilepsy, Restless Leg Syndrome, Parkinson Disease and Rheumatoid Arthritis.
It was an event where it was our time to talk about our own conditions and share our thoughts with the members of UCB. We were allowed to tell them how we feel, how we cope, or not, as the case may be. How UCB can improve our lives. The event was one of total thought, care and consideration to all our needs. We all met up at our meal times and went to our own groups and workshops during the day to discuss our own specific conditions. Interpreters were on hand via our headsets so we could all understand what was being said.
Another such brave person I met was Catherine who suffers with epilepsy. She eventually managed to keep her health in check and under control. She told us of how she had just got married and wanted to start a family but there was a price to pay. She needed to reduce her medication to safeguard her unborn baby. She then jumped from three seizures a year to one per week. But she was such a joy to listen to and an inspiration of hope and that is what my story is all about.
"Hope" is how we deal with our own conditions, in our case Restless Leg Syndrome.
Many days we lose sight of hope with this condition but I am sure there will be an answer for us one day, let us "Hope" it is soon.
Beverley