Hi my name is Hon and I also suffer from Epidermolysis Bullosa (EB), some of you may already met me and seen for yourself how I cope living with EB, but to those who do not know what it feels like to suffer from one of the 'Top Ten Hell on Earth Illness' then I shall briefly explain.

Living with any type of illness is hard work, especially with something like EB. Each day I have to commit a few hours to gently soak of the previous day's dressings in the bath, then slowly lance/ pierce the blisters with a needle and then apply creams/ ointments to the wounds and then gently wrap special dressings and bandages over them each day.

This routine has become second nature and yes it does get me down on some days especially when I see my friends jump out of bed put on their clothes and they are ready for the day whilst I am still busy stuck doing my medical routine.

Sometimes people forget how lucky they are not to suffer any form of disease, not having to face the severe agonising pain of wounds especially blistering on the eyes itself, and in the worst form, blisters can occur simply by swallowing foods which rub against the throat and thus causing the blisters to block off the wind pipe and then having to spend endless hours and days resting in bed or in hospital so that the blisters can heal.

This is a vicious cycle that never ends as there is no cure for Epidermolysis Bullosa, there's no effective treatment, and one can only bear the excruciating pain and try to avoid the blisters the best they can. But life isn't all that disheartening, as one has to look beyond the pain and suffering to benefit from what life has to offer and enjoy while it lasts. Luckily there's this charity called DebRA which was formed by a group of parents with children with EB some 26 years ago, and they have been a great support and help for those people who's life are affected by EB. Some of you may remember the charity's name, as it was greatly publicised by the documentary about 'The boy who's skin fell off' which was shown last year on Channel 4. Jonny Kennedy was a courageous and remarkable man, and I was lucky enough to meet him on a few occasions when DebRA set up their annual weekend away for EB sufferers, I learnt a lot from him, and never knew he did so much for DebRA until I saw the documentary and heard what kind of charity events he had done for DebRA. Did you know he also did a parachute jump and abseiling, unfortunately he broke a few bones on the latter but he didn't complain one bit until he was back on the ground, now that's what I call brave! His one of my inspiration's to do my own charity events for DebRA. So if your still reading and would like to help me to raise the profile of DebRA and also help fundraise for the charity then please give all that you can, as every little bit helps to fund for vital research and support for those affected by EB. If you like to come and meet me in person I shall be at:- Headcorn Parachute Club Headcorn Aerodrome Headcorn Kent TN27 9HX 2nd of July -- Unfortunately the weather wasn't right for the sky dive as there was too much low lever clouds making the landing zone hard to spot, so my sky diving will take place on:- 17th of August 2005 from 9:00am - until I jumped out of a perfectly good working plane and freefall from 12'000 ft at speeds from 120 - 145mph, before I hit the ground... hopefully with a parachute strapped to me! And most likely with a few more sores and blisters, before the skydiving took place! Hopefully the weather should be better too! UPDATE ======== Yay... I did my sky dive at last! It was brilliant, though I did felt a bit sick when the instructor did all those turnings in midair and I did get some blistering and sores where the straps held me in place, but nothing I can't handle. Just like to say a big thank you to all of you who supported me during my daring challenge, and hopefully I have raised more awareness for DebRA and to give encouragement to other EB sufferer's that you can overcome your disability once you set your mind to it. Thank you for visiting my fundraising page. Please dig deep and sponsor me online. Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you. So please sponsor me now! Many thanks for your kind support. Best wishes Hon