Hello my name is Danny

I live on my own with my faithful old dog Alfred in Peterborough, united kingdom

This is my story: I was born with a very rare genetic condition called Pseudoxanthoma-elasticum ( yes quite a mouthful lol ) or pxe for short.

My wonderful condition affects many parts of the body for example can lead to the normal elastic fibres of the skin, eyes and cardiovascular system gradually becoming calcified.

More information at https://www.pxe.org/ or https://www.facebook.com/groups/PXEers or

https://twitter.com/pxe

Now the problem I have is my pxe is effecting my vision and back in 2014 I started to get the early syptoms of macular degeneration in my right eye and was treated with a drug called Avastin and administered as injections into my eye which did not work so I am now centrally vision blind in my right eye, now Avastin is an unlicensed drug here in the UK and the reason an unlicensed drug was used is because my condition is so rare that the health service who decide who gets funding for treatment say there is not enough information or clinical evidence associated with my condition that warrants the financial use of a licensed drug called Lucentis so a cheap alternative as in Avastin was used.

Lucentis is freely given for the combat of age related macular degeneration however because my macular degeneration is not age related I do not fit the criteria to have the medication on the nhs.

In 2016 I started to develop symptoms of macular degeneration in my left eye and had 3 injections of Avastin then out the blue my specialist secured a free offer from the manufacturer of the drug Lucentis of which I have had 7 injections so far and great news it is working to retain/maintain my sight/vision.

Now the bad news is that the manufacturer of the drug namely Novartis on the knowledge and feedback by my specialist that the medication is working for my type of macular degeneration have decided to stop my free injections from September 2017 as they see the potential for charging for the drug for my condition so I was told by my specialist to apply for funding from my local care commission to pay for my treatment and yes you have guessed it that I have been rejected by my care commission for funding even though my specialist has put it in writing that the drug is working in my case so from September2017 my injections stop so my eyesight will start to deteriorate and I will lose my sight in my left eye thus becoming centrally vision blind in both eyes.

It is a sad state of affairs that there is a drug available that works and I am proof of that but because it all boils down to money I am going to be allowed to go blind because my condition is rare and care commissions wont fund the cost of the drug ( although I have been led to believe some do ) a post code lottery effect I guess, however I will still maintain to fight for funding while I have sight and god forbid I do go blind for lack of treatment due to finance I will campaign endlessly for others in the same boat as I am, I have got my local MP involved so fingers crossed for a result in overturning my rejection for funding from Peterborough care commission.

I really do not understand the logic in the care commisions rejection because if they wont fund my treatment and I do go blind then surely it will cost the goverment/health aurthority more in the long term as in a care plan to look after me as in carers and god knows what else help wise I would need and the reality of my situation is truly frightening the proverbial out of me.

Now my only option at this moment in time is to go private and pay for the injections myself which are around £1500 to £2000 ( from what my specialist has told me ) per injection and I have to have them ever 6 to 8 weeks and the treatment is ongoing, I have been told some patents require  50 plus injections or in some cases have to have them for the duration of their life which equates to a vast sum of money and as I am already disabled due to other symptoms of PXE and live on disability benefit that is impossible unless I can ask you guys to help me, asking for help is not my style even from family or friends so to ask for help from people I don't even know is very hard indeed.

I really do not want to go blind so I am asking for the generosity of you guys to help me raise £50.000 and this will fund approx. 25 injections.

Please feel free to share my page with others https://www.justgiving.com/crowdfunding/help-save-my-sight

Kind regards

Danny.