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Jasmine Interacted with Patients with Rare Neurological Disorders Every Day,
Then She Became One
Subheading style here
In January 2021, Jasmine was 26 and studying to become a nurse while working as a medical assistant in a research university neurology clinic. Her duties were wide-ranging and patient-focused, supporting patients with a variety of neurological conditions. It was a good fit while she put herself through school.
Little did she know, she was about to start the road to becoming a patient herself.
frequently diagnosed cancer in women, and endometrial cancer (which accounts for 90% of uterine cancers) is one of the few cancers where both diagnoses and death rates are increasing in the U.S.
16,000-
17,000
About 16,000 to 17,000 people in the United States have NMOSD.
9x
more
All people can be affected by NMOSD—but women may be 9 times more likely to be impacted than men.
2- to
3-fold
higher
The prevalence is 2-to 3-fold higher in Black and Asian populations.
Navigating a “new normal” that included heavy fatigue and the anxiety of never knowing when a new attack might occur, Jasmine pushed forward seeking treatment options that would reduce attacks and not interrupt her daily life. What makes NMOSD so difficult to live with is that, unlike MS, it isn’t progressively degenerative. Rather, NMOSD patients experience targeted attacks, seemingly at random, incurring new damage to the optic nerves and/or spinal cord that can lead to accumulated disability. If left untreated, the effects of these attacks can be permanent.
Who is Affected by NMOSD?
Know your body
Know the
potential signs
Be an advocate for yourself and other women
What SHE didn't know
Diagnosis and Treatment
says Dr. Ahmed Obeidat, a neurology specialist who treats NMOSD patients. “We encourage them to talk openly with us. It’s through this openness that a long-lasting relationship is formed that leads to the best outcomes. Every patient, no matter who their doctor is, should feel empowered to speak up and ask for the care they deserve.”
Jasmine feels having open and honest conversations with physicians helps them understand the full picture of what patients are experiencing and can help them recommend the appropriate treatments.
“If something doesn’t feel right, you need to ask questions,” Jasmine urges. “Knowledge is power when it comes to health.”
It started with an itchy left eye. It felt like a bit of dust blurring her vision, but she didn’t think much about it. Her sight deteriorated rapidly over the next two days, and she rushed to the emergency room after talking with the doctors in her office.
Jasmine’s doctors suspected multiple sclerosis (MS) after initial testing, but the diagnosis couldn’t be confirmed. Because of this, she advocated for more tests and received a lumbar puncture as well as a blood test to detect a specific antibody called aquaporin-4. Within a week, she was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare and debilitating autoimmune disease of the central nervous system that causes damage to the optic nerve, spinal cord and brain stem through repeated flares, also known as attacks or relapses. Previously known as Devic’s disease, it is often confused for MS.
“It felt surreal,” Jasmine recalls. “What are the chances I’d have a rare disease that is actually treated at the clinic where I work? I was scared and couldn’t believe it, but I knew I was going to start a treatment that my doctors trusted. I said to myself, ‘I can do this.'”
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Sponsored by Horizon Therapeutics
When her neurologist recommended she try UPLIZNA® (inebilizumab-cdon), Jasmine did her research. UPLIZNA is designed to deplete the B cells that make the antibodies that lead to NMOSD attacks. The twice-yearly dosing schedule for UPLIZNA appealed to Jasmine. With her lifestyle, it fit into her routine well. UPLIZNA treatment involves a 90-minute, IV-administered infusion, followed by observation time. Jasmine doesn’t need to take time off from work. She can do her infusions in the evening after work and head home.
Jasmine has now been receiving UPLIZNA treatments for more than a year. She’s excited to return to school, with only six months left before her clinical internships begin.
“While I still have some NMOSD symptoms, like fatigue and brain fog, physically, my NMOSD symptoms feel stable now. I’m not afraid of having another relapse that may set me back again,” Jasmine says.
Jasmine has now been receiving UPLIZNA treatments for over a year.
“Physically, my NMOSD symptoms feel stable now,” Jasmine says. She’s excited to return to school; she only has six months left before her clinical internships begin. Although everyone responds to treatment differently, Jasmine says that UPLIZNA has been treating her well.
Advice for Other Patients with
Autoimmune Disorders
Although her short journey to diagnosis isn’t typical for NMOSD patients, Jasmine says one of the reasons she was diagnosed within days was because she advocated for her health. She encourages other patients to keep track of their symptoms, and to know that it’s important to always talk with their doctors about what they’re experiencing and discuss the impact of symptoms on their daily life.
“In my practice, the patient is the captain of the care team,”
1
About 10,000 to 15,000 people in the United States have NMOSD.
All people can be affected by NMOSD—but women may be 9 times more likely to be impacted than men.
The prevalence is 2-to 3-fold higher in Black and Asian populations.
1,2
2
References:
1. Flanagan EP, et al. Epidemiology of aquaporin-4 autoimmunity and neuromyelitis optica spectrum. Ann Neurol. 2016;79(5):775-783.
2. Wingerchuk DM. Neuromyelitis optica: effect of gender. J Neurol Sci. 2009;286(1-2):18-23.
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:
Before receiving UPLIZNA, tell your healthcare provider about all of your medical conditions, including if you:
Knowing the symptoms, what to look for, and knowing the treatments, helped me push myself.
IMPORTANT SAFETY INFORMATION
Sponsored by Horizon Therapeutics
By StoryStudio on [July 13, 2022 11:19 AM]
Find NMOSD Specialists Near You
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:
• headache • fever • nausea • muscle aches
• sleepiness • rash • shortness of breath
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:
• painful and frequent urination
• nasal congestion, runny nose, sore throat, fever, chills,
cough, body aches
• 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:
• weakness on one side of the body
• confusion
• changes in your vision
• loss of coordination in your arms and legs
• changes in your personality
• changes in thinking or memory
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.
Please see Medication Guide or visit UPLIZNA.com for more information.
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.
See "What are the possible side effects of UPLIZNA?" for more information about side effects.
How will I receive UPLIZNA?
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.
•
UPLIZNA is given through a needle placed in a vein (IV or intravenous infusion) in your arm.
•
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.
•
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?"
•
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.
•
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.
•
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:
•
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:
• headache
• nausea
• sleepiness
• shortness of breath
• fever
• muscle aches
• rash
— weakness on one side of
the body
— loss of coordination in
your arms and legs
— changes in your vision
— changes in thinking or
memory
— confusion
— changes in your personality
• painful and frequent urination
have or think you have an infection.
—
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.
—
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.
—
have or have ever had hepatitis B or are a carrier of the hepatitis B virus.
—
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.
—
• nasal congestion, runny nose, sore throat, fever, chills, cough, body aches
Please see Medication Guide or visit UPLIZNA.com for more information.
— had a life-threatening infusion reaction to UPLIZNA.
— an active hepatitis B virus infection.
— active or untreated inactive (latent) tuberculosis.
®
“I was trying to figure out how to not let NMOSD take over my whole life,” says Jasmine. “I was fortunate to have access to doctors who knew the disease and were able to treat it aggressively. Knowing the symptoms, what to look for and knowing the treatments, helped me push myself.”
As her doctors developed a treatment plan, Jasmine kept notes about her symptoms and day-to-day physical and mental health. Because NMOSD symptoms can vary wildly ― anything from blindness to numbness in the extremities to violent pain to loss of mobility ― it was important to discern what her symptoms were. Jasmine remained engaged with her health, which inspired her to advocate for a treatment that worked for her. She needed a treatment that would aggressively fight the disease but be as unobtrusive as possible to her daily life.
By StoryStudio on September 1, 2022 9:19 AM
08/22 P-UPZ-US-00388
Although her short journey to diagnosis isn’t typical for NMOSD patients, Jasmine says one of the reasons she was diagnosed within days was because she advocated for her health. She encourages other patients to keep track of their symptoms, and to know that it’s important to always talk with their doctors about what they’re experiencing and discuss the impact of symptoms on their daily life.
“In my practice, the patient is the captain of the care team,” says Dr. Ahmed Obeidat, a neurology specialist who treats NMOSD patients. “We encourage them to talk openly with us. It’s through this openness that a long-lasting relationship is formed that leads to the best outcomes. Every patient, no matter who their doctor is, should feel empowered to speak up and ask for the care they deserve.”
Jasmine feels having open and honest conversations with physicians helps them understand the full picture of what patients are experiencing and can help them recommend the appropriate treatments.
“If something doesn’t feel right, you need to ask questions,” Jasmine urges. “Knowledge is power when it comes to health.”
— had a life-threatening infusion reaction to UPLIZNA.
— an active hepatitis B virus infection.
— active or untreated inactive (latent) tuberculosis.
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:
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:
• headache
• nausea
• sleepiness
• shortness of breath
• fever
• muscle aches
• rash
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:
• painful and frequent urination
• nasal congestion, runny nose, sore throat, fever, chills, cough,
body aches
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:
•
— weakness on one side of
the body
— loss of coordination in
your arms and legs
— changes in your vision
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.
— changes in thinking or
memory
— confusion
— changes in your personality