The story of Barbie
Igg4 Related Disease – an orphan disease with many faces. IgG4 RD is an autoimmune disease which can attack any organ in the human body, known in the US since 2012. I was diagnosed last year after year-and-a-half of suffering and testing. Igg4 RD has no cure, and it will be something I fight against (learn to leave with) for the rest of my life. Igg4 RD travels through the lymphatic system causing systemic organ damage. All human bodies produce igg4, but my disease makes my body produce too much igg4 causing organ damage, excessive systematic inflammation; which in turn causes pain. The only known treatment is a daily high dosage of corticosteroid (aka steroids). But since it is a danger to be a lifelong corticosteroid user, doctors studying this disease are trying new ways to treat the disease; like using corticosteroid–sparing agents such as chemotherapy pills and new biologics such as rituximab which is still in medical trials. If you have an illness that defies diagnosis, search IgG4 Related Disease. Grateful for stubborn medical professionals at the University of Chicago who never gave up until I was correctly diagnosed. It took seven specialties, 50 blood tests, and three biopsies but I was finally, diagnosed. Other patients are not as lucky. Many people suffer for many years without a diagnosis and by the time they are diagnosed there are experiencing organ failure. It is with great hopes I write this today wishing that there will be more research done on this disease to find ways to alleviate the suffering and extend the life expectancy of many here in the US and around the world. This autoimmune disease could be triggered at any age, from very young children to the elderly. The cause of the IgG4–related disease is unknown.
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.