When I read the news that you recently had a kidney transplant due to complications from lupus, I immediately felt a sense of heartbreak. I have been where you are today. I know the roller coaster of fear and uncertainty that follows a lupus diagnosis, and the stress and anxiety that comes from waiting for a transplant. You also reminded me how fortunate I am and what an amazing gift that you and I have both received ― a new kidney.
After nine years on a kidney transplant list, in 2009, I received a kidney from an anonymous donor. I can’t imagine it has been easy for you to share such a personal experience so publicly, but as a person with lupus I am grateful for your honesty and bravery. For too long, our stories and the pain and devastation that lupus wreaks on so many lives has been invisible.
My own journey with lupus started when I woke up one day unable to move. Frustrated and in pain, I researched my symptoms, and found an article about lupus and asked to be tested. I was only diagnosed after the doctors discovered that lupus had impacted my kidneys so badly that I was immediately admitted to the hospital. Shortly after my diagnosis, I experienced an avalanche of complications including grand mal seizures, brain inflammation, kidney failure and a rare blood disorder.
Since my transplant, I have been given a renewed quality of life and sense of hope. But the feeling that lupus is always there lurking and waiting in the background to wreak havoc will never leave me. I also wish all those who are striving for remission of a lupus flare or waiting for their match can have an experience such as ours. This week, I lost another dear friend to lupus. I am tired of saying goodbye and seeing too many lives cut short by the disease.
We can and need to change the future for everyone living with lupus, or struggling to find answers. I knew very little about lupus when I was diagnosed. Because of you, more people are talking about lupus and getting access to resources and support. You are giving me hope that another person will not struggle searching for answers like I did. You are giving me hope that one day there will be treatments so we do not need kidney transplants. I am also inspired because there is more research being done and more resources out there to help people than ever before.
We, the lupus community, appreciate the impact you are making on the public’s understanding and awareness of this disease. It means so much to me and the millions living with lupus. I will continue to fight for those that can’t, and as one lupus warrior to another, I want to say thank you and hope you will continue to fight with us. We need you.