Today, traditionally being the last day of February. is ‘Rare Disease Day’, raising awareness of, but more importantly, making decisions about, the rare diseases that so many of us live with, and highlighting the impact that these decisions have on our lives.
In Europe, a Disease is classed as ‘rare’ is it affects less than 1 in 2000 people, with more than 6000 recognised and documented conditions being classed as ‘rare’. This means that 1 in 20 people will live with a rare disease at some point in their lives; more often than not, a cure not having been found for the disorder or condition. Not having a cure is one of the thing that those with chronic, rare illnesses struggle to come to terms with the most; the reality that the symptoms they have, will be there forever.
There is continuous debate about the illnesses that are characterised as ‘rare’, especially when it’s an illness that is predicted to affect so many more people than are officially diagnosed. A rare disease could affect literally a handful of people, but could also include hundreds of thousands of people. Symptoms can lie on a spectrum to undetectable (and hence under, over, or mis-diagnosed because of the lack of fault gene not yet being identified), to illnesses that are disabling, life-limiting, life-threatening, and debilitating to the point of complete reliance on someone else.
In my eyes, whether you have a condition that’s rare or common, officially diagnosed or not, with the genetic fault identified or not, whether there’s a chance of the disease going, whether there is treatment to control it or even cure it, or if you have a condition that will be with you for life, there’s no right or wrong way to deal with it. Everyone comes to terms and adapts their life in their own way, and this being the 6th Rare Disease Day that I personally am ‘celebrating’ as a person with a rare condition.
Many will know me as the ‘old Katie’, especially those who I sent to school with. They’ll remember the person with no illness, who could walk, talk, study, communicate, participate and live the life of any person my age. Those who I knew a bit mater will remember the starting of me becoming ill; allergies, epipens, and far too much time spent in Student Services! Later on from that are the people I met at uni - at the start of both years I attempted! - who knew of me being ill, having multiple ambulances called, and so selflessly took on the role of looking after me when I wasn’t well; an occurrence that became too frequent to continue with my studies. The people I’ve met since, who have known me from day 1 as wheelchair bound, severely unwell, and: feeding, breathing, urinating, and administering medication through tubes and lines - many of which have saved my life on a number of occasions.
I’ve been thinking and thinking about what to write about this rare disease day, and I’ve decided that I want to firstly just briefly mention how grateful, proud, busy, yet purposeful I feel since starting ‘Bravery Bottles’ - a project of which many of you will know of by now, seeing it on my social media accounts. I didn’t for 1 minute expect to have the response I have got from it, but with over 150 members; 100 of which being part of the loveliest, most supportive, understanding support group. The only thing that we, as participants of the project have in common, is a chronic illness. Given that there is no restrictions on what these illnesses are, a lot of strangers have been brought together, and out of it has blossomed some beautiful friendships.
The other thing I wanted to mention, are the friends that have known me since age 14, long before I was ill, and have stuck by me ever since, not once letting my illness change the way their perception on me as a person and have never once made me feel left out or not considered my needs when making plans. They’ve been there to give Epipens, call ambulances, speak to my parents, visit me in a multitude of hospitals, driven miles to visit me, included me in every conversation, been there to cheer me up when I need it, and quite simply, have just been the best friends I could ever have wished for, in the situation I’ve found myself in. Sian, Claire, Shelby & Amy; I don’t give you girls enough credit for difference you make to my life. The bond we all have is so special and one that I know will last a lifetime; I just wish there was a way for me to show you how much you all mean to me. Thank you for being the best friends, and for letting me just be ‘Katie’ when we’re together. I love you all lots & lots.
So, back to Rare Disease Day, show your support, donate if and what you can (you’ll be surprised what a difference even £1 can make when it comes to charity projects), appreciate that there are lots of people suffering; even if you may not see it, and most importantly - show that you care for those who are rare.
LATEST NEWS, UPDATES AND EVENTS
LATEST NEWS, UPDATES, FUNDRAISING AND EVENTS:
18/3/18 - I am currently selling raffle tickets for the Easter Fundraiser' (information on how to purchase tickets can be found here).
17/3/18 - ALL APPLICATIONS CLOSED UNTIL FURTHER NOTICE. DETAILS TO FOLLOW.
3/3/18 - I am currently going through the process of redesigning this blog so that 'Bravery Bottles' is separate from my personal blog; where I post about my illnesses and life updates..this means that sometimes, my blog may be closed from time-to-time, but I’m always available to be contacted at email@example.com.