Rare Disease Why Should You Care

I have been told I am always banging on about something, a pain in the ass, always shouting about something,In life you have choices you can go along as you do every single day and do not try to change anything as long as things are OK for you, why should you care about anyone else,and why should you care about anyone else after all life is hard enough and things are fine for me and I do not ask anyone to help me so why should I help anyone else who I do not even know or really care about,you can go on for hours giving reasons why you should not do anything.On doing my work to raise awareness of rare diseases I have heard them all people seem to live in their own little bubble of life things are OK for me thank you very much I have no time to care about anyone else let alone think about rare diseases, or children lying  in hospital for weeks with something that noone has heard of as long as I am OK I have nothing to worry about.I suppose you are right life is just hard enough and worry about someone else would just get in the way,I am one of the people who seems to care about how life is for other people and if its children it seem to make me worry more about them,you may think this is madness and you cannot change anything or no matter how much I try and do something nothing will make a difference.Life and government and the media have changed our lives forever some think for the good but others think for the worst, from early morning to late at night you are being programmed by the powers to be in how we should think or care about how we run our lives we have let TV and the Media into our homes without a thought of how they are changing how we think about each other as human beings and how we care about people who cannot help themselves,we have changed about how we view our lives and our communities where we live.The time not to worry about anyone else seems to be the norm you must ask yourself why has life changed so much why have we no time to care about anyone why do we not have time to think about people who cannot help themselves, we hear day and daily about people who are abusing the health service and abusing the benefits system and why we should not fund cures for cancers or hospital treatment, we are told day and daily about the benefit cheats people who are abusing our system  drip feeding us day and daily about the people who are cheating the country out of millions this is all great stuff its news worthy, its what they want us to worry about,its how they want you to think its PC to ring the Government dob them in lines to tell on people with in your communities about who is ripping the system of this is all great media But is it ?  ask my self why is there not the same time spent on trying to inform people about Children and families that are trying to cope with illness that man has not even found a cure for,why are we not told about how many children are hurting with illness that have not being diagnosed for weeks ,we are being programed not to think about this by the daily drip feed about how much it is costing us,Its not PC not to think what it cost to fund someone to live a little longer with their family we are told its not worth spending the money on someone who may very well not be here with in six months we seem to have become hardened to caring for people who just cant cope by themselves the need for research for rare diseases is so great and the need for funding for research is just so vital to bring about cures for rare diseases we cannot sit back and think rare disease will not happen to me if we thought in this way we would never have found cures for some cancers that were out there.Rare Disease effects Children and is usually passed on by the parents due to genes.Rare Diseases need funding from our governments and a research policy set up to help with the growing problem of rare disease and the effects it has on the children who suffer with rare disease,  and for the families and carers who look after the children diagnosed with a rare disease, the thinking must change in regard to policy and a soften up to the policy that cuts to funding for rare diseases must be relaxed until patient and family groups can try to raise funds in the same way as other major charities, like Action Cancer, Cancer Research. Rare disease patient groups are few and far between information and media coverage is none existant and leave patients vulnerable in finding expert advice and having to travel sometimes hundreds of mile for monthly visits to see their consultants, rare disease is rare but as patients families are well aware that more and more young children are showing up at hospitals presenting with symptoms of common illness only to find after weeks of investigations and blood tests, doctors diagnosis a rare disease this time that the investigations are carried out means the patient is not getting the correct treatment and sometimes no treatments exist at all, this means the doctors have to try other drugs that are usually used to treat cancer or other drugs until they find a profile that works on the patient, if this was happening in the wider population it would not be long before an outcry as to why its happening in this day and age.Rare Disease not only effects the patients, it effects the whole family circle as rare diseases are usually passed down by the mother or the father, or both. The pressure that is put on the families is immense, sometimes it causes family breakdown, Rare disease is not like any other disease,  a patient and the family have no idea of the outcome, for their loved one it usually is a life of fear that every little thing will cause infection or the patient cannot take part in normal activities they have to be watched permanently for any change or raised temperature that would show signs of a infection or seizure, that could possibility end the life of the patient,the family goes through this every single day and every single night sometimes not sleeping for days because the patient has to be constantley watched. Once more if this was happening in the general population there would be a outcry yet the families of a person with rare disease have to  go through the nightmare of rare diseases we are only a small group who are trying to make the difference for the patients and their families, we do not have the funds that other major charities have, we find it difficult to get people to listen to the plight of families that are going through the nightmare of rare disease day and daily,  if you are reading this you are reading about patients and families who have no means to raise the profile of their plight due to the lack of funding and patients are going thought this nightmare without real government funding. You could help us to help them please listen to our plea and donate to our fund please give us a chance to help this cause.