As a four year old I can remember numerous trips to musty old hospitals (well, we are talking the 60s here), to see forever smiling nurses and very, very important looking Professors of Nephrology. It didn’t mean very much to me then... But it means a great deal to me now.
 |
Our family has been troubled with kidney disease for as far back as anyone cares to remember and 40 years down the line for myself, I’ve seen my father pass away waiting for his second transplant and have borne witness to the doctor diagnosing my son with the same genetic kidney disorder. Alport’s Syndrome to give the proper title. A relatively rare, hereditary and potentially fatal form of kidney disease, which despite being largely unheard of is such a big part of my life.
Now I work pretty hard to be optimistic and positive (and that’s generally, not just in terms of illness), but to be in a position where I’m unable to control the long-term health of my child is challenging to say the least.
Looking towards the years of dialysis and uncertainty for my joyful seven year old just isn’t that appealing. And although I know we’ll cope and laugh along the way, we’d prefer to be doing it with hope in our hearts. We’re not the only family plagued by this condition and therefore I know we’re not the only ones who feel this way.
And so, taking my positivity in both hands, the time seemed right to create a charity that will focus on just that. Optimism and hope. And here we are – Action for Alport’s. Our commitment is to breaking through this rare kidney disease by conducting dynamic research to first control its effects and foremost to banish it to the wilderness where it belongs.
Yes, we have some tough times ahead. Yes, it will interrupt our relatively easy lives. But ultimately, working together as a team we can make a big difference. Who are ‘we’? Well we’re the patient, the family, friends, researchers, consultants, professors, clinicians and colleagues. We’re everyone touched by Alport’s Syndrome.
Let’s face it, life wouldn’t be as terrific as it is without the wonderful people we have walking alongside us, laughing with us, supporting us and on occasion crying with us. Joining together in a huge effort will mean more fun, more support, more dynamism, more energy and most importantly more results. Let’s do it! Let’s break through rare kidney disease.
Deborah Fielding
Founder
Action for Alport’s Campaign
Message from Fiona Phillips
After meeting Deborah and hearing about Alport's Syndrome, I would like to wish the Action for Alport’s Campaign every success. It is such a worthwhile cause. As this is the only dedicated fundraising portal for this disease in the UK, I look forward to seeing the Campaign receive the much needed support it deserves...as it surely will. With every best wish for your success.
Fiona Phillips
