“Our greatest social responsibility is to demonstrate to all others how to live in this world of hunger, sorrow, and injustice with generosity, dignity, and decency.”
If we pry back the reason why most charitable societies/ associations/ organizations started, we will find that almost all of them were created first and foremost, to relieve the suffering or plight of another living being. This desire to impact almost always stem from a deep seated personal experience that became so impactful and memorable that it bore a need to prevent a repeat and thus a light gets activated from within to begin something that would circumvent another being from going through what you have gone through yourself. A retrospective shift that moved from inwards to outwards.
Organizations or associations that represent patients must be able to function as a channel that help amplify the voices of sufferers so as to get the attention of the powers that may be to effect a change for the better. Change can come in the form of legislative amendments, enforcement of policies that assists in the provision of appropriate care and support, the reduction or abolishment of taxation that works against the betterment of the patients, advocating for medical treatment hampered by red tape and government laws or in some cases, the facilitation of proper aid for sufferers who otherwise would not know where to go or who to approach for help. There is nothing worse than having to go through the anguish of facing a extreme situation on your own where a disease robs you of life as you know it and reduces you to a condition so desperate that you start wishing in your head that life would just end right away. But, you know that you can’t leave because you are not quite ready to say goodbye to your loved ones, so instead, you bear it with all the confidence you can muster and smile while you fall apart inside.
Patient organization’s advocacy on behalf of the afflicted are especially key for rare diseases since the nature of the unique conditions are not generally known to the wider community and because of the smaller number of those afflicted (compared to the other more well known ones), most healthcare agencies do not provide adequate care or treatment whereas many of the country’s government policies also do not meet the criteria to fully support the needs of the sufferers. On top of this, the features of the rare diseases are also not common to doctors and nurses. This can cause severe implications when it comes to diagnosis and more often than not, sufferers fall through the cracks and many are left waiting for medical help and do not receive it.
Helen Clarke says,”No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Wise words but action is what needs to happen in the pursuit for change and if you are a patient reading this, it starts with you. It is you the sufferer who must realise that at the end of the day, you need to stand up and speak up. By speaking up, you make your voice heard. The hopelessness you experience need not continue because there are people out there who are going through exactly what you are facing, some even more severe. When you make yourself heard, miracles happen. Reach out to patient advocacy groups and work with them to gather force. Someone once said, “the depth of your conviction determines the height of your accomplishment.” This is so true and today, start by slowly transforming that pain inside to become a righteous conviction. Your life matters and do not let anyone make you feel that you do not count.