Benlysta Was Approved And Hope Was Born – A Lupus Patient’s Perspective
March 9, 2011 – I will remember this day, Benlysta was approved and hope was born.
I will never forget the day I was diagnosed with Lupus. That was 18 years ago, and I am now 33. For those of you doing the math, that means I have had Lupus over half my life. Right now Lupus is incurable, so I expect to have Lupus for the rest of my life. I probably will have a hard time even remembering what it is like to not feel sick; I know I have hard a hard time remembering now. Throughout my life living with Lupus I have at one time or another been treated with varying combinations of the only drugs available known to treat lupus. This hopeless cocktail was usually some mix of steroids and chemotherapeutics. This isn’t even counting the medicines I took and still take to counteract all the side effects from the medicines I need to survive.
I remember the day I went to the library to look for a book about lupus. Yes, kids the library… that funny little building where real life paper books are stored. First off, I remember feeling like a freak when no one even knew about lupus. Then, I finally found a book on the subject and there it was, staring at me: “Lupus – an incurable, fatal disease” I remember thinking I am 15 and my life was over.
I remember the day that my family and I reached out to our local Lupus Support Organization. It was then that we bought a new book. In this book “lupus was an incurable, chronic disease”. They were so helpful and gave us all the support and education we needed to better understand the disease. Although we were overwhelmed, we no longer felt alone. The one thing I remember about that day was talking to the Executive Director and having her explain each of the treatment options. When I asked her what she was currently taking, she explained to me that she was taking the same medications she had been twenty something years ago. She also explained that these medications were not even made specifically for lupus, but we, in a sense, borrow them to treat our disease. I was shocked. Of course there were dosage changes, and even some exact pill changes, but the reality was that there had been no change in the way lupus patients were treated in all that time. She could offer me support, she could offer me information, but she didn’t have any real good news… it was the same ol’ news.
I remember the day that I decided to stand up, to get involved and to volunteer. I knew in my soul something more could be done. I heard a little voice in side of me that said every bit counts- and I need to do my share. This day was a few weeks before my first fundraiser event, our local Lupus walk. I even “came out” to my sorority at my college and told them that I had lupus. It was freeing. We rallied together with family and friends, we raised money for research and we walked as a team. I remember raising the money, and feeling confident that the money was going to help local patients and families living with lupus. What I wasn’t so sure about was the money that was going to research. I mean, if doctors and scientists didn’t even know why people get lupus, and if they haven’t found a drug to help us yet, why should I believe that they will. Lupus never gets on television, you don’t hear about lupus in the news, in newspapers, magazines, or anything. In fact, I had to go to multiple doctors to even get a diagnosis. Lupus was the disease that no one knew about, so why would I believe anyone cared enough to do research about it?
But I had a thread of hope. So every year for 15 years my family and I walked for lupus and every year we raised more money then the year before. I had a hope that every year something would get better for lupus patients. This past year- we had our best year yet- and just my team alone rose close to $12,000 If money was going to go to research then I was going to do my part.
In that time, I started this website (ButYouDontLookSick.com) I felt that I had a voice, and I could use it to inform and support others. I was just a girl with a laptop at the time, but I had vision. In time, I started to be recognized for my writing, having been printed in newspapers, magazines, and prestigious websites. When people kept reading, I kept writing. I started traveling as a speaker for different Lupus organizations. I loved it. If people kept listening, I kept talking.
I also joined my local and national board of directors for the Lupus Alliance. I felt I needed to do my part. I have gone to both Albany, NY and to Washington, DC to lobby for more research dollars to be spent on Lupus. Yes, I even brought my little 9 month old baby at the time to Capital Hill to meet our delegates.
I have planned fundraisers, helped with support groups, went to classes, and done anything asked when it came to helping others live better lives with lupus. I never want anyone to feel alone, and I never want anyone with lupus to feel hopeless.
Why am I sharing all these memories with you? Because even though I can never forget all these memories in my past with Lupus, I also will never forget today.
I will never forget waiting all week to hear if the FDA was going to approve this new drug called Benlysta. Everyone in the Lupus community thought this decision might come on Thursday, so I never really expected it today at all. But as soon as the news came, I couldn’t even believe my eyes. I had to check other news sites to even be positive. Within minutes it was as if you could hear the collective roar of excitement across the internet from the Lupus community which has grown into a family through social media. I received so many emails, tweets, posts, phone calls and more that I couldn’t even count. I cried, I screamed as I called my mom and other Lupus friends…. The happiness was so evident it was tangible.
I will never forget the day Benlysta was approved because:
It is a new and hopeful medical option. In my 18 years living with lupus I have now been treated at one time or another with all the available drugs. Even though the drug does not work for all, and might not work for me, it gives me hope. It gives me options.
When on Benlysta, a Lupus patient can potentially lower and even come off of many of their current treatments, some of these treatments include horrible drugs like steroids and chemotherapy. These toxic treatments have long term adverse effects on the body. Although it might be too late for some of the damage my body has undergone, this gives me hope that this is the start of a new era for the treatment of lupus patients. Hopefully patients getting diagnosed and treated now will not only have more options in their lifetime, but fewer side effects too. Hopefully this will be the start of a new generation of lupus patients that will not have to endure the toxic chemical treatment options that I had to.
When the FDA put off their decision in December I was disappointed. Now, I personally feel a sense like “we won!” because it means the FDA heard the outcry of lupus patients voices.
In my opinion this decision helps give lupus a sense of validity. If a huge pharmaceutical company put time and money into developing a drug, and our government and FDA approved it, that means it is real. To this day, I get asked “What is Lupus?” To this day I still have to explain the disease to people in my life, and sometimes that even means doctors or nurses and other medical staff in emergency rooms. I also have been questioned on the validity of the disease. Is it real? Hopefully this will change that outlook.
I used to make a sad joke and say that the only time Lupus was in the media was if someone died, or if Dr. House on the popular television show didn’t know what the patient had. Lupus is never in the news. Lupus never gets the spotlight. Apparently lupus isn’t one of the “popular” diseases. But because the FDA approved Benlysta I could not even keep up with the news stories online tonight. I am bursting with excitement and anticipation to see what kind of coverage might come tomorrow. Whatever it is, it will be more then none.
Will Benlysta work for everyone? I don’t know. Will Benlysta work for me? I hope so and I am willing and excited to find out. Hopefully the research, the scientists, doctors, and even lupus patients don’t stop here. Hopefully this will be the first good news in a new era of hope. This is just the beginning of a new life with Lupus.
I will never forget that Benlysta was approved today, because now I have hope.
Links of interest:
Learn more about Lupus
Written by Christine Miserandino.
Christine is the owner of butyoudontlooksick.com. She is the author of “The Spoon Theory” as well has hundreds of other articles. She is proud to have her articles honored with awards and featured in many newspapers, magazines, and television media. She is a patient advocate for Lupus as well as all those living with chronic illness. She is a professional speaker and has toured the country. Her passion is helping people. You can learn more about christine here, you can also find her on twitter @bydls
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Are you a Lupus Patient, or are you a caregiver of a lupus patient? What are your feelings on the approval of Benlysta? Post your thoughts, feelings and reactions below in the comments section to share with all.
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