Rare Disease Day

Yesterday, the last day of February (and where possible, the 'rare' 29th), is Rare Disease Day. 2013 is the 6th year of celebrating international Rare Disease Day, with hundreds of patient organisations from more than 60 countries and regions planning awareness-raising activities based around the slogan 'Rare Disorders without Borders'. 

I was fortunate enough to attend the parliamentary reception at the Houses of Parliament with my mum on behalf of UKPIPS. The Earl Howe (Parliamentary Under-Secretary of State for Quality at the Dept. of Health) talked about specific pledges and made it clear how important it is for each patient with a rare disorder to have a care coordinator. This is something that I would really benefit from as trying to manage over 10 different consultants, GP, various hospitals, clinics etc is confusing and time consuming, not to mention frustrating. 

It was also really interesting to meet patients with other disorders and rare diseases that I hadn't encountered before but who suffered similarly. 

It's coming up to a year since I was diagnosed with CVID and I can't believe how quickly the time has gone. It's also now been 2 months since my last hospital admission. As a treat, I'm flying to Poland with my lovely friend., George, and straight after that flying to Argentina. 6 months ago I couldn't foresee this. Friends, work, polo, good food/wine and puppy....2013 has started off really well and I hope that this is set to continue.

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