Story

Thanks for taking the time to visit Christian's JustGiving page. LHON stands for Leber's Hereditary Optic Neuropathy. LHON is a devastating eye disease that causes irreversible blindness and hits otherwise healthy people in their mid-20s. Unfortunately there are no treatments for the condition. We need to know much more about the cause of LHON so we can develop new treatments. This is a major focus of my research group. We are aiming very high and looking to raise at least £1000 to aid the research of LHON at Newcastle university before the year is out. First up is a 23 mile walk from where Christian and Myself work (Crosshills) all the way to Leeds, expecting to take around 7 hours. **UPDATE Monday 10/10/11** Well Christian and the rest of us completed the walk yesterday and I think I speak for all us when I say it was much harder than ever imagined. In total it took us 11 hours of walking!!. All of us are walking like John Wayne and have lots of blisters and weirdly "sock burns" which I didnt even know existed. Also as we have blasted the £1000 target and still have some funds to be added I've upped the ante and made it £2000. Remember what a good cause this is and the massive effort that Christian had to make both phyiscally and mentally, please continue to dig into those pockets and help us hit the revised target. Please take the time to read christians statement below which will explain the impacts of LHON on him. "Hello, my name is Christian and here is my story of how Leber’s Hereditary Optic Neuropathy disease or (LHON for short) has affected my life. In December of 2010 I discovered that my sight was deteriorating. I went to a specialist who examined me; he mentioned that my central vision was a concern to him.   I was referred to Mr David Atkins a consultant at the BRI hospital, I met him in January. At this time my sight had gone to frightening levels and was getting very serious, I was not able to read or recognise anyone.    In our first meeting after talking to me and going through a number of tests (one of which was a field test which measures the central vision), Mr Atkins mentioned Leber’s to his registrar who concurred it could very well be LHON.   I was now in a period of doing a lot of other tests such as chest x-rays, MRI scans, and a number of blood tests one of which was a genetic blood test which had to go to Newcastle hospital it took 3-4 weeks to get the results.   In February 2011 I asked my consultant if my sight would come back, he didn't sound positive, at this point I knew there was a very good chance that I would never see again...   My daily life in mid February was of crying and feeling very sad about my condition, my life had changed completely, I knew at this stage that I would never see anyone’s face, read or drive again, amongst many other things I used to take for granted.   My usual smiling face had gone and it would take many months for a smile to reappear, my parents were very concerned for me and did everything they could for me, but unfortunately my mood would not change I don’t think I have been more frightened in my life.    In March Mr Atkins referred me to Newcastle hospital to do further tests, these tests confirmed that my central vision was badly affected and when my genetic blood results came back Mr Atkins confirmed that I had the Leber’s disease.   Once I was officially informed that I had LHON, I was referred to St James’s hospital in May where I met Mr Backhouse who is a consultant neurologist, he had the unfortunate task of telling me that I won’t ever see again like I used to, and that there is no cure to LHON.    On the 16of May I returned back to work, after 5 months off.  Due to my condition and severe sight loss I could not go back without the help of Access to Work (an organisation that helps people get back to work who suffer from a disability).   I would not have been able to return to work without the help of the Human Resources department who got the software and equipment to help me navigate on my computer.   It is now September and I have learned how to touch type as it was very difficult for me to see the keys, I have also learned how to use magnification tools on my computer, and also talking software. This was quite difficult at first, but has helped me significantly to do an important role at Debt advisory (this is where I work).   Due to having LHON disease I am unable to recognise anybody, I am unable to see anyone’s face. Facial expression means a lot in everyday life and for me that had been the hardest aspect to overcome. My daily life has changed I can’t go to the supermarket without asking for help, I can’t see coins or notes to pay for things so I use my touch to recognise what I have. Shaving has been more difficult due to the fact I can’t see my face, so I feel my face to see if I have missed anything. People would not know I am registered blind so I carry my white symbol cane with me so that people are aware of it.    I am still coming to terms with my condition physically as well as mentally, but time helps you to cope with even the most traumatic things in life, I do not think I would have said this in February/March time, but there are people who are much worse off in life than me.      As you can see it's a very emotional process to go through and Christian is now adament that we should do as much as possible to aid in future research of this very rare condition                                                                So please dig deep and donate now.

LHON - Never heard of it!

LHON - Never heard of it!

Story

Donation summary