Today is World Lupus Day, which was established to raise awareness surrounding the disease.
For those who are unfamiliar with Lupus, it’s a chronic autoimmune disease which attacks healthy tissue that can cause severe inflammation and pain in any part of the body.
I had never heard of Lupus until my childhood friend Lucy was stricken with the disease. She was diagnosed in 2004, but I learned of her condition only after it worsened a few years later. Beatles fans most likely remember Lucy as the girl in my childhood drawing, who inspired my Dad to write “Lucy in the Sky With Diamonds.” But to me, she was just my trusted partner-in-crime at Heath House Nursery School in Surrey — giggling as I jumped into a freezing-cold swimming pool or throwing paint at me (and I at her) after we’d been separated for being naughty.
Photos via Lupus.org and Metro.co.uk
We unfortunately lost touch after I moved away, but as adults we briefly reunited at one of my concerts in the 1980s. Lucy went on to marry and made a good life for herself working with children who had special needs. Sadly, she passed away in the fall of 2009 when she was just 46 years old. Thankfully, I was able to reconnect with her again for a short time before she lost her fight against Lupus.
I co-wrote the song “Lucy” that year with James Scott Cook to benefit St. Thomas’ Lupus Trust in the U.K. and the Lupus Foundation of America (LFA). In 2010, in tribute to her, I helped establish the Lucy Vodden Research Grant Award. A year later, I became a Global Ambassador for the LFA. But the fight against Lupus has a long way to go.
People who suffer from Lupus often endure debilitating symptoms, which may include swollen and painful joints, headaches, chest pains, facial rashes, hair loss, mouth sores, numbness in extremities and severe fatigue. Often the physical limitations of their symptoms impact their personal life and work significantly.
In addition to the physical symptoms, Lupus can create emotional stress for those suffering and for their loved ones. This can lead to depression and/or anxiety, either of which, as we know, can cause even more potential issues.
There is no known cure for the disease, but there are treatments available to minimize flare-ups. Aside from lifestyle changes that doctors may recommend, many people with Lupus are prescribed Hydroxychloroquine, which has received a lot of buzz lately due to Covid-19. Though it’s not been proven to fight the effects of the virus, because early studies showed promise, many rushed to purchase large quantities of the drug. This created a shortage for those already taking it for Lupus or other ailments. If you currently have a prescription for Hydroxychloroquine and need help gaining access to refills or have questions about availability, the LFA has a page dedicated to providing updates.
Aside from existing methods of easing Lupus symptoms, we find promise in the acceleration of new treatments like Telitacicept, which recently attained fast-track status by the FDA and new findings about the benefits of Omega-3 Fatty Acids. These are just a few examples of the important studies scientists are conducting to lessen or eliminate the effects of Lupus.
Through research, awareness and advocacy, it’s my hope that one day the mysteries that surround Lupus will be solved and those diagnosed will no longer have their lives permanently altered, or—like my friend Lucy—lost, because of this devastating disease.
There are many ways to help in the fight against Lupus. Join me to Put on Purple May 15th and spread awareness online throughout the month. You can also donate directly to the Lucy Vodden Research Grant Award.
