How One Singer With NMOSD Used Her Voice to Advocate for a Correct Diagnosis
I am grateful for my voice. When I sing, people listen.
“Turn that up!” my neighbors will call from their respective porches when they stand outside to hear me sing.
It was always this way. I grew up in a family of musicians and remember people asking me to sing, even from a young age. At one point when I was younger, I had the opportunity to sing on television and was elated to find so many people had enjoyed the performance.
Naturally, my music-forward upbringing led me to pursue a career in music. I began traveling with a 15-piece blues band and found my passion for performing carried far beyond touring professionally—I also line dance, sing karaoke and DJ for fun.
However, dancing looks different for me today than it did several years ago.
One night in 2015, I had just finished a karaoke set and made my way onto the dance floor for some line dancing. I noticed a feeling of pins and needles in my feet, which I rationalized as my shoes being the culprit behind the discomfort.
But the next morning, I found that walking was excruciating—like a burning snake was slithering up and down my legs.
I didn’t know it at the time, but as I resolved to visit the hospital, I had begun a years-long journey in which I’d need to use my gift—the power of my voice—in a new way: for self-advocacy.
Finding help and an initial diagnosis
Following my night of dancing, I went to the hospital where they gave me pain medicine, then sent me on my way. The medicine didn’t offer lasting help and the pain only intensified, so I returned to the hospital—where I received another quick treatment before being sent back home.
The next morning, I tried to get out of bed and hit the floor.
I had no feeling below the waist and my legs were unable to hold me up, so I called a friend to take me back to the hospital for the third time in two days.
I spent 8 long hours in the emergency room that day before I was finally admitted to the hospital. The doctors ran test after inconclusive test.
I was ultimately given a lumbar test that finally provided some direction: I was diagnosed with transverse myelitis (TM), a condition characterized by inflammation of the spinal cord.
I had never heard of TM before, so I immediately conducted research of my own. I began by listening to the voices of others. After a week in the hospital and another 28 days in rehab with the internet for company, I watched YouTube videos and read stories of other patients with TM trying to learn about the condition.
While I was looking through other patients’ stories, I stumbled across a news clip. In the clip, a news anchor interviewed a woman about a rare disease her son lived with, and I instantly saw myself in the son’s experiences—one day, the son got out of bed just to fall to the floor, exactly like what happened to me.
I watched the video over and over again, sending it to my sisters and the rest of my family, exclaiming, “This is what happened to me!”
The story linked to additional resources, which I pursued. I spoke with my own doctors about what I had found, using my voice and research to advocate for my health and reached out for more information. I requested to be referred to new neurologists who conducted additional testing.
As it turns out, my research led us in the right direction, and it was confirmed I was misdiagnosed.
A new diagnosis and a new direction
A month following my TM misdiagnosis and additional testing, including an MRI and blood test, my true diagnosis was revealed: neuromyelitis optica spectrum disorder (NMOSD). NMOSD is a rare lifelong neurological disease caused by inflammation in the central nervous system, which is made up of the optic nerve, brain stem and spinal cord. This inflammation can also lead to attacks, which can cause permanent disabilities, such as blindness and paralysis—hallmarks of NMOSD. It is an often misdiagnosed condition and I found myself once again researching how to manage this new diagnosis.
At the suggestion of my physician, I enrolled in the N-MOmentum clinical trial for the treatment, now known as UPLIZNA® (inebilizumab-cdon). My physician explained that UPLIZNA is a prescription medicine used to treat adults with NMOSD who are anti-aquaporin-4 (AQP4) antibody positive and designed to deplete the B cells, which generate antibodies that target the central nervous system, causing inflammation and leading to NMOSD attacks.
Following more research, I felt this medicine was the right option for me as I learned UPLIZNA can help reduce the risk of NMOSD attacks that may lead to permanent disability that could stop me from dancing or singing. I also thought the twice-yearly dosing after the initial dose was convenient and wouldn’t get in the way of me doing the things I love.
Although everyone responds to treatment differently, I haven’t experienced an NMOSD attack after beginning UPLIZNA. I also have not experienced any side effects. Through discussions with my doctor and research, I learned the most common side effects include urinary tract infection and joint pain, although these are not all the possible side effects of UPLIZNA. Over time, I also noticed my lingering NMOSD symptoms from my previous relapse—burning pain that would travel from my upper thigh to my ankle and the swelling in my legs and feet—started to improve.
I want to stress that my treatment journey only reflects my experiences and know that others with NMOSD may find different routes of navigating this rare disease more suitable for their needs. All patients should have a discussion with their doctor about finding the right treatment option for them.
Moving forward and speaking out
I’m vocal about my condition and my experiences. Now feeling more in control of my NMOSD, I have tried to become the knowledge center for my doctors who aren’t as familiar with the disease. In fact, I even shared information with my dentist on NMOSD, which he kindly printed and read over to make sure he was giving me the best care.
I no longer need to use a wheelchair at all times. Though I sometimes still require assistance while walking, I am able to drive and have regained my independence. I even make it out onto the dance floor now and again, line dancing with the aid of my walker or cane.
I credit using my voice and conducting my own research to better advocate for my health. Because of this, I was able to maintain a positive attitude and self-assuredness to navigate my new normal living with a rare disease.
I encourage other people who are recently diagnosed with NMOSD to do their own research and take control of their diagnosis. Sometimes partnering with your doctor can be intimidating but I recommend you take advantage of the available resources to learn more about NMOSD and prepare for your next doctor’s appointment.
Looking back on the ups and downs of my last few years, I feel that I can use my own experiences to help others. I wanted to share my story because—I’m grateful I have a voice that might make a change.
Panga is an UPLIZNA patient ambassador for Horizon Therapeutics. Her experience may be different from your own, so always speak to a health care professional.
To learn more about life with NMOSD and UPLIZNA, visit UPLIZNA.com and see the Important Safety Information below.
IMPORTANT SAFETY INFORMATION
What is UPLIZNA?
UPLIZNA is a prescription medicine used to treat adults with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody positive.
It is not known if UPLIZNA is safe or effective in children.
Who should not receive UPLIZNA?
You should not receive UPLIZNA if you have:
- – had a life-threatening infusion reaction to UPLIZNA.
- – an active hepatitis B virus infection.
- – active or untreated inactive (latent) tuberculosis.
Before receiving UPLIZNA, tell your healthcare provider about all of your medical conditions, including if you:
- – have or think you have an infection.
- – have ever taken, currently take, or plan to take medicines that affect your immune system, or other treatments for NMOSD. These medicines may increase your risk of getting an infection.
- – have or have ever had hepatitis B or are a carrier of the hepatitis B virus.
- – have or have ever had tuberculosis.
- – have had a recent vaccination or are scheduled to receive any vaccinations. You should receive any required vaccines at least 4 weeks before you start treatment with UPLIZNA.
- – are pregnant or plan to become pregnant. It is not known if UPLIZNA will harm your unborn baby. Females should use birth control (contraception) during treatment with UPLIZNA and for 6 months after your last infusion of UPLIZNA.
- – are breastfeeding or plan to breastfeed. It is not known if UPLIZNA passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you receive UPLIZNA.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What is the most important information I should know about UPLIZNA?
UPLIZNA may cause serious side effects, including:
Infusion reactions. UPLIZNA can cause infusion reactions that can be serious or may cause you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of UPLIZNA for signs and symptoms of an infusion reaction. Tell your healthcare provider right away if you get any of these symptoms:
If you develop an infusion reaction, your healthcare provider may need to stop or slow down the rate of your infusion and treat your symptoms.
Infections. Infections can happen during treatment with UPLIZNA. Tell your healthcare provider right away if you have an infection or get any of these symptoms:
- UPLIZNA taken before or after other medicines that weaken the immune system may increase your risk of getting infections.
- Hepatitis B virus (HBV) reactivation. Before starting treatment with UPLIZNA, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with UPLIZNA. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems, including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving UPLIZNA.
- Progressive Multifocal Leukoencephalopathy (PML). PML may happen with UPLIZNA. PML is a rare brain infection that leads to death or severe disability. Symptoms of PML may get worse over days to weeks. Call your healthcare provider right away if you get any of these symptoms:
- Tuberculosis (TB). TB is caused by an infection in the lungs. Before starting treatment with UPLIZNA, your healthcare provider will check to see if you are at risk for getting TB or have ever had TB.
- Vaccinations. Certain vaccines, called “live” or “live attenuated” vaccines, are not recommended in people receiving UPLIZNA. Talk to your healthcare provider before receiving any vaccinations. If you have a baby and you were receiving UPLIZNA during pregnancy, it is important to tell your baby’s healthcare provider about your UPLIZNA use so they can decide when your baby should receive any vaccine.
See “What are the possible side effects of UPLIZNA?” for more information about side effects.
How will I receive UPLIZNA?
- UPLIZNA is given through a needle placed in a vein (IV or intravenous infusion) in your arm.
- Before treatment with UPLIZNA, your healthcare provider will give you a corticosteroid medicine, an antihistamine, and a fever prevention medicine to help infusion reactions become less frequent and less severe. See “What is the most important information I should know about UPLIZNA?”
- Your first dose of UPLIZNA will be given as 2 separate infusions, 2 weeks apart.
- Your next doses of UPLIZNA will be given as one infusion every 6 months.
- Each infusion will last about 1 hour and 30 minutes. After each infusion, you will be monitored by a healthcare provider for at least 1 hour.
What are the possible side effects of UPLIZNA?
UPLIZNA may cause serious side effects, including:
- See “What is the most important information I should know about UPLIZNA?”
- low blood cell counts. UPLIZNA may cause a decrease in some types of blood cells. Your healthcare provider will do blood tests to check your blood cell counts.
The most common side effects include urinary tract infection and joint pain.
These are not all the possible side effects of UPLIZNA.
Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.