lack of support for primary Immune deficiency diseases
What is behind the lack of support for primary Immune deficiency diseases?
Why do so few primary immune deficiency patients get the support they need? Why is it so hard to raise awareness? These are questions I have pondered much of my adult life. I have fought much more than a rare and life threatening disease, I have had to fight ignorance as well. Its not just me. I have observed time and time again with other PI patients and their social circle as well. I have both experienced and heard about situations that if you were to fill in the blank with another disease in place of PI it would rarely happen. Parents being judged instead of supported as their child is dying, People unwilling to take what are by all logic reasonable precautions to protect a patient, and seriously sick patients being treated as selfish fakers and drama queens instead of being offered the respect and support they deserve. Enter Coronavirus. Now we have Facebook statuses urging everyone not to panic because only people with weak immune systems will die!
Life was never easy for anyone born with a disability. In fact we are living in the best times ever. It is believed by many that the Spartans left their weak and imperfect infants to die on mountain tops or threw them off cliffs. Throughout early history disabilities were often seen as a curse and the disabled were thought to be able to give the evil eye. Disabled people have been burned, hanged and in more modern history thrown into institutions where they had little chance of ever joining mainstream society. Even today there is ritual killings of people with albinism in Malawi. Given our history is it any wonder those of us with invisible disability are often given a hard time or are left feeling not very cared about?
I get why we don’t get the concern or funding for research as other diseases. Most people take their immune systems for granted and know very little about how it works or what happens if its not working properly. There is little about PI in the media or in film so people lack the framework that they have for many other diseases. Primary immune deficiency diseases are also rare and aren’t contagious so the attitude is why should we care or donate towards finding a cure? Its not me or mine.. Even if it is!
But we are a culture that claims to value children. Why is so little funding given to fight for a cure for genetic diseases? rare disease is a leading killer of our children. Nearly a third of the children with rare disease will not live to see their 5th birthday. rare disease is responsible for 35% of all deaths (of any cause) during the first year of life! Less than 5% of Rare Diseases currently have a FDA approved disease altering therapy that permanently cures or stops the disease.
Right now is where you may want to stop reading this because I am going to tell you what I really think. Here it is. There is serious discrimination against those born with genetic weakness throughout mankind and the animal kingdom that is passed down. Studies on mice and other animals have shown that some information such as fears can be passed down to future generations. It is well known that all human babies all have a fear of falling and loud noises. l.facebook.com/l.php also describes a Collective conscious in his l.facebook.com/l.php in 1893. Collective conscious is ideas, morals, beliefs that are common to the average person.
In birds something called Siblicide occurs when resources, specifically food sources, are scarce. The strongest or most aggressive bird kills off its siblings to eliminate competition for food. Or sometimes its the parents that choose to feed only the strongest bird, while the weaker one squeaks for food until it eventually dies. This ensures that the bird with the best chances to live and best genetics passes its genes on down the line.
I think this is deeply ingrained in the human race. Those with genetic defects are weak or the weakness is a sign of intellectual or personality defects. I know first hand the opposite to be true. Adversity builds strength. Its easy to be born healthy. Its hard to survive when you have a lot stacked against you. Even getting a diagnosis or adequate medical care is often a journey that takes many years when you have a rare disease. I know children that understand more about the human body than do most healthy adults. Genetic weakness yes- inferiority absolutely not! Most of us have so much to offer the world- if given the chance.
I have been blessed to have known many smart and compassionate people, people who do not believe in their heart or hearts that individuals with genetic defects should just disappear like a weak hatching. And for those who secretly do, patients like me aren’t going anywhere quietly. Modern medicine has been very kind to me. Without the discoveries of antibiotics and later immune globulin there is now way I could have survived Blood and plasma donors are my rock stars! Without you people like me wouldn’t live so very long. The love of my mother and later my husband are why I survived when society may have had me tossed away. To both of them I am eternally grateful. With love almost anything is possible. Even the weak and defective can thrive.