Letter from the United Kingdom
By Sarah Jones

On Good Friday in April 1992, a 17-year old girl usually bright and happy woke to find that she wasn’t feeling too well. Nothing too significant but definitely not right. Perhaps the beginnings of ‘flu? How was she to know that the moment marked the beginning of months of battles with doctors, an entire change in lifestyle and a complete new outlook on life? A very strange thing to happen to someone so young, embarking upon adult life. Or so it seemed to me. People of 17 don’t get ill, do they?

This is where my story begins. At the time, I thought that my experiences in the hands of the vast array of medics I was paraded in front of, combined with the rapid disappearance of my friends, bound for university and exciting new lives?as I should have been?would never leave me.

Certainly there were many months of worry from my family, indifference from former close friends, and a sense of injustice. Injustice, not because I had DI, (no one ever said life was fair!), but injustice because the condition is so rare. There were no support structures we could locate in the UK, no medical people seemed to have any idea where we could get help and advice, and nobody knew of others who might also have the condition.

For two years I became a walking experiment, trying out other ways of taking DDAVP, calculating dosages, realising that when the dosage was too low I was liable to become irritable and moody. It was truly a time of getting to know my DI! More importantl I believe now, were the changes that happened to me personally as a result. There is nothing like a medical drama to make you realize what your priorities are and should be!

Having coped with central DI (neurogenic DI) for seven years now, I cannot imagine my life any other way. I am now accustomed to the signs and symptoms, the hilarious incidents when I find myself suddenly ‘caught short,’ and the overwhelming lack of knowledge (and other sufferers!) with the condition. I am also strangely grateful that DI came into my life when it did. I would be leading a very different life than the one I have now had this dramatic change not had so many consequences: university, my career, and London, which is now home, would never had happened without DI.

In terms of healthcare services?I think we have quite a different system over here. To begin with I don’t pay any costs at all for my DDAVP. The National Health Service (NHS) pays for medicine for people with DI, Diabetes Mellitus, and other chronic conditions, although strangely not asthma. Also I don’t have to pay for my hospital visits or any treatment they think I need (MRI scan, blood tests, etc.). However, if I want to see a specialist in pituitary conditions, then I definitely do have to pay. Unfortunately as far as I am aware, no such person exists for DI sufferers (I’d love to meet up with Dr. Gary!). This all sounds great, which it is in many ways, but for the fact that in general, NHS hospitals are run down and horrible, doctors are horribly over worked so you only get to see them for about 5 minutes, and it can take as long as a year to get an appointment! Which isn’t so great. For that reason, it is always recommended that anyone with conditions like DI have private medical cover (which I do). One of the other problems in the UK is that nobody has heard of DI?and I mean nobody! It was actually my mum who diagnosed me?she is a nurse and remembered nursing a little girl with post-operative DI 25 years previously!

The Diabestes Insipidus Foundation is something of a revelation to me. I feel like I am suddenly a member of quite an exclusive club, able to talk DI sufferer to DI sufferer! What a joy it is to ask others how they cope in situations and how they have been affected, and to gather handy tips for the future. If I can still remember the bewildering feelings of being diagnosed, I know that many of you will too. How wonderful to have the Foundation ready and waiting, offering practical information and sympathetic advice. Keep up the good work!

Sarah Jones may be contacted at sarah.jones@humancapitalsolutions.com; Flat 199, Block D, Ossington Buildings, Marylebone, London W1M 3HU; telephone +44 171 935 4694.