2017 was - without question - one of the most interesting years so far.
It all started off when I was asked to be a Volunteer Ambassador by The Pituitary Foundation. What an honour! It was so nice to be asked and presented some amazing opportunities: talking to Pfizer, working with Novartis to produce an awareness video for Nurses about Acromegaly, and of course The Pituitary Foundation Conference in November and their volunteer training event in April.
My role as an advocate for Acromegaly and my even rarer condition Wyburn-Mason syndrome took me even further afield after winning a Scholarship to an Acromegaly Conference in Vancouver, Belgrade for a Rare Disease and Orphan Drugs Conference and the beautiful surroundings of Cambridge for the Cambridge Rare Disease Network (CRDN). I attended as a patient representative and not in my role as volunteer this time. This was a particularly valuable event. The theme for the day was Re-imagining the Patient Journey and Rare Disease advocates and organisations from all over the UK met to talk and share their experiences.
Everyone was asked to produce posters about their conditions, focusing on four main topics: Causes of the condition, Symptoms and Treatments, Impact of the Condition and Hopes and Aspirations. I set about producing two posters, using feedback and information from the community online (not so easy for Wyburn-Mason syndrome as there is literally just a handful of us!) and was really happy with the final results - click below to see them.
Attendees were also asked to produce a Patient Journey poster and five of the best would then have the opportunity to talk about their condition in front of the entire audience. Having written a book about my amazing medical journey, I knew I had a special story to tell; the trouble was trying to fit it all on to a poster! But with help from a brilliant designer friend of mine, we produced a really effective poster (click below to see) and - what do you know - I was one of the winning entries!
It was amazing to have the opportunity to talk on stage and highlight both Wyburn-Mason syndrome and Acromegaly. After what felt like thirty seconds, a card was flashed in front of me to tell me I only had one minute left! I had just enough time to cover what the main hopes were for those diagnosed with Acromegaly. Again, after consultation with support groups on Facebook, I reduced it down to the following:
1. Earlier diagnosis
2. Routine IGF-1 and OGTT testing
3. Continued attempt to raise awareness
Overall it was a fantastic day and no doubt helped raise awareness for a myriad of Rare Diseases and conditions. It was also a great networking opportunity too, and I got to talk to all manner of advocates, patient groups, pharmaceuticals and specialists working hard to improve awareness and treatment of Rare Diseases. I even got to sell a pile of books too! Awareness raising happens in all forms.