Health and Me

Ishita Roy

A Common Medication That Leaves You Trapped 'In Your Own Half-Alive Corpse' Condition

Imagine applying a cream to soothe your itchy, irritated skin, only to later find yourself bedridden, burning from the inside out, with no end in sight. This is the haunting reality of Topical Steroid Withdrawal (TSW), a devastating condition that some people develop after stopping common steroid creams used to treat <a href="https://www.healthandme.com/health/eczema">eczema</a> and other skin conditions.

Topical corticosteroids are widely prescribed. They’re found in medicine cabinets around the world and are often recommended by doctors as a first line of defense against inflammation. But for some, particularly those who’ve used them for years, the consequences of withdrawal are nothing short of horrifying.

<h4>“Like Pouring Boiling Water Over My Skin”</h4>

Kelly Barta, reports The New York Post, was just 38 when she decided to stop using the topical steroid creams she had relied on since childhood. Diagnosed with eczema as a young girl, she began using hydrocortisone and gradually moved to stronger prescriptions as her condition worsened.

By adulthood, Barta was using one of the most potent steroid creams on the market.

“When I quit, it felt like someone poured boiling water over my whole body,” she recalled. Her entire body turned red and itchy. She couldn’t sleep. The burning sensation never stopped—for five long years.

Her life unraveled. She lost her job, her marriage, her hair, and nearly her life. “You’re imprisoned in this body with unrelenting pain,” she said. “Don’t try to get to tomorrow—just survive the next hour.”

According to the International Topical Steroid Awareness Network (ITSAN), TSW can leave sufferers housebound or bedridden for months or years. Symptoms include extreme redness, relentless itching, nerve pain, and “oozing” skin. Many describe it as being “trapped in your own half-alive corpse.”

Though eczema affects around 31 million Americans, most are unaware of TSW. Doctors, too, often misdiagnose the condition as a worsening of eczema, and the standard recommendation is more steroids—further fueling the cycle.

“I was getting to the point where I’d reach into my purse and come out with hives,” Barta said. Her general practitioner dismissed her concerns, suggesting lifelong steroid use. But a pharmacy technician warned her she might be overusing the medication.

No one had ever explained that long-term use could make her skin thinner, more reactive, and vulnerable to new allergies. Barta’s own research revealed the disturbing truth—that what was supposed to help her had actually been harming her.

Jada Jones, now 23, tells the Post that she was also diagnosed with eczema as a child. When a dermatologist prescribed her mid-strength steroids, her skin improved quickly. Encouraged, she continued using them on and off—until high school stress triggered a flare-up.

Jones asked her doctor about TSW, but was reassured it wasn’t a risk. Instead, she was bumped up to the strongest Class 1 steroids.

Her condition worsened in 2022 while pursuing a creative career in Los Angeles. “It looked like purplish bruising. Not eczema,” she said. A scheduled photo shoot had to be abandoned midway. “I was bedridden from that day on for the next four months.”

Her body was on fire, her skin cracked, and pain consumed every waking moment. “They’re looking at you like you’re damn near a burn victim,” she said of her baffled doctors.

<h4>Healing in Unconventional Places</h4>

With traditional medicine offering little support, Jones took matters into her own hands. She moved to Tulum, Mexico, to try healing saltwater and later traveled to Thailand for Cold Atmospheric Plasma (CAP) therapy—a lesser-known treatment that has shown promise for TSW.

While she still battles symptoms, her condition has improved. Today, she manages her skin using infrared and red-light therapy.

“My skin has very mild eczema symptoms now,” she said. “I’d rather tolerate this for the rest of my life than ever go through that again.”

Despite its severity, Topical Steroid Withdrawal Syndrome remains under-researched and poorly understood. There is no official diagnostic criteria, no universally accepted treatment, and many doctors still dispute its existence.

Patients are left to advocate for themselves, rely on online support groups, and explore alternative treatments. ITSAN continues to push for awareness and research funding.

Both Barta and Jones believe education is key. Steroids can help—but only if used sparingly and for short periods. “You think you’re getting help,” Barta said, “but then you end up 100 times worse than you were before.”

Health Conditions A-Z

health

skin and hair

Skin & Hair

health and wellness

eczema

skin problems

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Imagine applying a cream to soothe your itchy, irritated skin, only to later find yourself bedridden, burning from the inside out, with no end in sight. This is the haunting reality of Topical Steroid Withdrawal (TSW), a devastating condition that some people develop after stopping common steroid creams used to treat eczema and other skin conditions.Topical corticosteroids are widely prescribed. They’re found in medicine cabinets around the world and are often recommended by doctors as a first line of defense against inflammation. But for some, particularly those who’ve used them for years, the consequences of withdrawal are nothing short of horrifying.“Like Pouring Boiling Water Over My Skin”Kelly Barta, reports The New York Post, was just 38 when she decided to stop using the topical steroid creams she had relied on since childhood. Diagnosed with eczema as a young girl, she began using hydrocortisone and gradually moved to stronger prescriptions as her condition worsened.By adulthood, Barta was using one of the most potent steroid creams on the market.“When I quit, it felt like someone poured boiling water over my whole body,” she recalled. Her entire body turned red and itchy. She couldn’t sleep. The burning sensation never stopped—for five long years.Her life unraveled. She lost her job, her marriage, her hair, and nearly her life. “You’re imprisoned in this body with unrelenting pain,” she said. “Don’t try to get to tomorrow—just survive the next hour.”Her case is not unique. According to the International Topical Steroid Awareness Network (ITSAN), TSW can leave sufferers housebound or bedridden for months or years. Symptoms include extreme redness, relentless itching, nerve pain, and “oozing” skin. Many describe it as being “trapped in your own half-alive corpse.”Misunderstood and MisdiagnosedThough eczema affects around 31 million Americans, most are unaware of TSW. Doctors, too, often misdiagnose the condition as a worsening of eczema, and the standard recommendation is more steroids—further fueling the cycle.“I was getting to the point where I’d reach into my purse and come out with hives,” Barta said. Her general practitioner dismissed her concerns, suggesting lifelong steroid use. But a pharmacy technician warned her she might be overusing the medication.No one had ever explained that long-term use could make her skin thinner, more reactive, and vulnerable to new allergies. Barta’s own research revealed the disturbing truth—that what was supposed to help her had actually been harming her.A  Shared BattleJada Jones, now 23, tells the Post that she was also diagnosed with eczema as a child. When a dermatologist prescribed her mid-strength steroids, her skin improved quickly. Encouraged, she continued using them on and off—until high school stress triggered a flare-up.Jones asked her doctor about TSW, but was reassured it wasn’t a risk. Instead, she was bumped up to the strongest Class 1 steroids.Her condition worsened in 2022 while pursuing a creative career in Los Angeles. “It looked like purplish bruising. Not eczema,” she said. A scheduled photo shoot had to be abandoned midway. “I was bedridden from that day on for the next four months.”Her body was on fire, her skin cracked, and pain consumed every waking moment. “They’re looking at you like you’re damn near a burn victim,” she said of her baffled doctors.Healing in Unconventional PlacesWith traditional medicine offering little support, Jones took matters into her own hands. She moved to Tulum, Mexico, to try healing saltwater and later traveled to Thailand for Cold Atmospheric Plasma (CAP) therapy—a lesser-known treatment that has shown promise for TSW.While she still battles symptoms, her condition has improved. Today, she manages her skin using infrared and red-light therapy.“My skin has very mild eczema symptoms now,” she said. “I’d rather tolerate this for the rest of my life than ever go through that again.”The Medical Mystery of TSWDespite its severity, Topical Steroid Withdrawal Syndrome remains under-researched and poorly understood. There is no official diagnostic criteria, no universally accepted treatment, and many doctors still dispute its existence.Patients are left to advocate for themselves, rely on online support groups, and explore alternative treatments. ITSAN continues to push for awareness and research funding.Both Barta and Jones believe education is key. Steroids can help—but only if used sparingly and for short periods. “You think you’re getting help,” Barta said, “but then you end up 100 times worse than you were before.”

a common medication that leaves you trapped 'in your own half-alive corpse' condition

Supriya Ramesh

Credits: Canva

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Not Just A Migraine: Why Doctors Call Trigeminal Neuralgia The “Suicide Disease”

not just a migraine: why doctors call trigeminal neuralgia the “suicide disease”

If the thought of a dental visit sends your heart racing, you’re not alone. Most people avoid visits to a dentist, considering it to be raising their anxiety levels and creating a panic. This fear is known as dental anxiety and is more common than you might expect. Studies state that around 36 per cent of the population experience this fear, and around 12 per cent have extreme dental phobia. So we turned to an expert to know how sedation works and if it really helps anxious people overcome the fear.

What Is Sedation Dentistry?

Don’t worry, it’s not a one-size-fits-all knockout. “In sedation dentistry, medication is used to relax the patients during any sort of invasive dental procedure,” explains Dr Kalsi. “It doesn’t mean that the patient will be unconscious; rather, the sedation levels may vary in intensity. They range from being minimum to deep and sometimes even general anaesthesia," says Dr Harleen Gandhi Kalsi. 

\In her words, “In minimal sedation, the individual is fully awake but feels calm. Deeply sedated patient is on the edge of unconsciousness.”

There are several ways sedation can be delivered:

<ul><li>Nitrous oxide (aka laughing gas): “Mild sedation inhaled through a mask, keeping you calm but fully responsive.”</li><li>Oral sedation: “A pill (like diazepam) taken an hour before the appointment, causing drowsiness and reducing anxiety.”</li><li>IV sedation: “A sedative drug is administered through a vein, allowing deeper and more controlled relaxation.”</li></ul>

No More Gritting Your Teeth Through the Pain

Wondering what the upside is? “The biggest benefit is psychological — sedation helps calm your mind and body, reducing the fear associated with dental procedures,” says Dr Kalsi.

But there’s more. “Sedation works alongside local anaesthesia to ensure you feel no pain during treatment, which reassures nervous patients.” You might even come out feeling like time flew. “Though the procedure may have taken hours, individuals feel it lasted for just a few minutes,” she points out.

If your body has a mind of its own in the chair, sedation can help with that too. “For patients who struggle with a strong gag reflex or the inability to sit still, sedation dentistry assists in making it a comfortable experience for the dentist as well as the patient,” Dr Kalsi says.

You might also not need to make as many dreaded trips. “Complex procedures can often be completed in one long sitting instead of multiple short visits, reducing the frequency of dental trips,” she adds.

A totally fair question. Dr Kalsi reassures, “If sedation is infused by a trained professional, sedation dentistry is safe.” She explains, “After reviewing your medical history, current drug usage and monitoring vitals, your dentist takes the final decision.”

sedation dentistry

dental anxiety

nitrous  oxide

oral sedation

iv sedation

pain free treatment

dental phobia

gag reflex

anxiety relief

dental procedures

If the thought of a dental visit sends your heart racing, you’re not alone. Most people avoid visits to a dentist, considering it to be raising their anxiety levels and creating a panic. This fear is known as dental anxiety and is more common than you might expect. Studies state that around 36 per cent of the population experience this fear, and around 12 per cent have extreme dental phobia. So we turned to an expert to know how sedation works and if it really helps anxious people overcome the fear. What Is Sedation Dentistry?Don’t worry, it’s not a one-size-fits-all knockout. “In sedation dentistry, medication is used to relax the patients during any sort of invasive dental procedure,” explains Dr Kalsi. “It doesn’t mean that the patient will be unconscious; rather, the sedation levels may vary in intensity. They range from being minimum to deep and sometimes even general anaesthesia," says Dr Harleen Gandhi Kalsi. \In her words, “In minimal sedation, the individual is fully awake but feels calm. Deeply sedated patient is on the edge of unconsciousness.”There are several ways sedation can be delivered:Nitrous oxide (aka laughing gas): “Mild sedation inhaled through a mask, keeping you calm but fully responsive.”Oral sedation: “A pill (like diazepam) taken an hour before the appointment, causing drowsiness and reducing anxiety.”IV sedation: “A sedative drug is administered through a vein, allowing deeper and more controlled relaxation.”No More Gritting Your Teeth Through the PainWondering what the upside is? “The biggest benefit is psychological — sedation helps calm your mind and body, reducing the fear associated with dental procedures,” says Dr Kalsi.But there’s more. “Sedation works alongside local anaesthesia to ensure you feel no pain during treatment, which reassures nervous patients.” You might even come out feeling like time flew. “Though the procedure may have taken hours, individuals feel it lasted for just a few minutes,” she points out.If your body has a mind of its own in the chair, sedation can help with that too. “For patients who struggle with a strong gag reflex or the inability to sit still, sedation dentistry assists in making it a comfortable experience for the dentist as well as the patient,” Dr Kalsi says.You might also not need to make as many dreaded trips. “Complex procedures can often be completed in one long sitting instead of multiple short visits, reducing the frequency of dental trips,” she adds.Is It Safe?A totally fair question. Dr Kalsi reassures, “If sedation is infused by a trained professional, sedation dentistry is safe.” She explains, “After reviewing your medical history, current drug usage and monitoring vitals, your dentist takes the final decision.”

how sedation helps people feel less nervous at the dentist

Over-the-Counter Vitamin B6 Linked To Nerve Damage: Hundreds Join Class Action In Australia

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Your Ethnicity May Be Putting You At Higher Risk For This Major Nerve Disorder

your ethnicity may be putting you at higher risk for this major nerve disorder

Diagnostic Anomaly: Rare Condition Turned Man’s Penis 'Rock Hard' Into Bone

diagnostic anomaly: rare condition turned man’s penis 'rock hard' into bone

When pain strikes your face like a bolt of lightning, it's not just a headache or a dental issue. It could be Trigeminal Neuralgia (TN), a condition so excruciating that it has been dubbed the “suicide disease”. Experts say it’s worse than a migraine, and sadly, most people don’t even know it exists until it hits them.

Dr. Namrata Dabas, HOD and Consultant, Pain and Palliative Care at Manipal Hospital, Dwarka, New Delhi, explains that the trigeminal nerve is the largest cranial nerve, carrying pain sensations from the face to the brain. “When it gets compressed or irritated, intense, electric shock-like pain is experienced by individuals, often on one side of their face,” she says. This kind of pain isn’t just bad; it’s chronic, and the triggers are disturbingly everyday: “eating, drinking, washing the face, or even a light breeze”.

Dr. Aparna Gupta, Associate Director of Neurology at Indian Spinal Injuries Centre, New Delhi, calls this condition “nerve pain of the fifth nerve”, adding that “the pain in this condition is extremely severe and excruciating, mainly in the half of the face.” It’s not just the intensity but the unpredictability: “The pain can be episodic, lasting from a few seconds to a few minutes, or it can be chronic… in a waxing, waning manner or at times, it may spike at intervals.”

While TN has several possible causes, Dr. Dabas says that it’s “mostly caused by compression of the trigeminal nerve by a nearby blood vessel loop.” Other times, it may follow a herpes zoster infection or result from a tumour pressing against the nerve. Still, she says, “TN is considered to be idiopathic, which means that no definite cause can be identified behind it in most situations.” Women and people over 50 are more likely to suffer from it.

Dr. Gupta agrees, adding that in some cases, “we found blood vessels which are surrounding the nerve, just destroying its sheath and causing the pain.” She also lists other causes like “a tumour compressing the nerve or a demyelinating condition called MS”.

It’s not just the pain; it’s how common daily actions can bring it on. Dr. Gupta points out that activities like “smiling, chewing or brushing or eating very hot or cold food like ice cream or hot coffees… all aggravate the pain.” The randomness and relentlessness of the condition can take a huge toll on mental health.

“An MRI is used to detect the underlying problem,” says Dr. Dabas. If a tumour or blood vessel compression is spotted, surgery is an option. Initially, doctors often start with neuropathic medications, but these can “cause side effects or stop working over time.” In those cases, she recommends a minimally invasive procedure: radiofrequency ablation of the trigeminal ganglion. “Performed under local anaesthesia, it uses radiofrequency ablation to burn a part of the trigeminal ganglion in a controlled manner,” she says. The relief is often immediate.

Dr. Gupta also lists treatments ranging from “anti-seizure medication” to “a nerve block or a local Botox in the region where the pain occurs”. In cases where a blood vessel is the culprit, “a microdiscectomy is done.” And when it’s due to MS or a tumour, “it requires the primary treatment”.

trigeminal neuralgia

facial pain

nerve compression

electric shock pain

suicide disease

chronic pain

neuropathic treatment

radiofrequency ablation

microdiscectomy

nerve disorder

When pain strikes your face like a bolt of lightning, it's not just a headache or a dental issue. It could be Trigeminal Neuralgia (TN), a condition so excruciating that it has been dubbed the “suicide disease”. Experts say it’s worse than a migraine, and sadly, most people don’t even know it exists until it hits them.What makes this pain so cruel?Dr. Namrata Dabas, HOD and Consultant, Pain and Palliative Care at Manipal Hospital, Dwarka, New Delhi, explains that the trigeminal nerve is the largest cranial nerve, carrying pain sensations from the face to the brain. “When it gets compressed or irritated, intense, electric shock-like pain is experienced by individuals, often on one side of their face,” she says. This kind of pain isn’t just bad; it’s chronic, and the triggers are disturbingly everyday: “eating, drinking, washing the face, or even a light breeze”.Dr. Aparna Gupta, Associate Director of Neurology at Indian Spinal Injuries Centre, New Delhi, calls this condition “nerve pain of the fifth nerve”, adding that “the pain in this condition is extremely severe and excruciating, mainly in the half of the face.” It’s not just the intensity but the unpredictability: “The pain can be episodic, lasting from a few seconds to a few minutes, or it can be chronic… in a waxing, waning manner or at times, it may spike at intervals.”But what causes it?While TN has several possible causes, Dr. Dabas says that it’s “mostly caused by compression of the trigeminal nerve by a nearby blood vessel loop.” Other times, it may follow a herpes zoster infection or result from a tumour pressing against the nerve. Still, she says, “TN is considered to be idiopathic, which means that no definite cause can be identified behind it in most situations.” Women and people over 50 are more likely to suffer from it.Dr. Gupta agrees, adding that in some cases, “we found blood vessels which are surrounding the nerve, just destroying its sheath and causing the pain.” She also lists other causes like “a tumour compressing the nerve or a demyelinating condition called MS”.When a smile or a sip can set it offIt’s not just the pain; it’s how common daily actions can bring it on. Dr. Gupta points out that activities like “smiling, chewing or brushing or eating very hot or cold food like ice cream or hot coffees… all aggravate the pain.” The randomness and relentlessness of the condition can take a huge toll on mental health.Managing the unmanageable“An MRI is used to detect the underlying problem,” says Dr. Dabas. If a tumour or blood vessel compression is spotted, surgery is an option. Initially, doctors often start with neuropathic medications, but these can “cause side effects or stop working over time.” In those cases, she recommends a minimally invasive procedure: radiofrequency ablation of the trigeminal ganglion. “Performed under local anaesthesia, it uses radiofrequency ablation to burn a part of the trigeminal ganglion in a controlled manner,” she says. The relief is often immediate. Dr. Gupta also lists treatments ranging from “anti-seizure medication” to “a nerve block or a local Botox in the region where the pain occurs”. In cases where a blood vessel is the culprit, “a microdiscectomy is done.” And when it’s due to MS or a tumour, “it requires the primary treatment”.

Tanya Dutt

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Rage Recedes After 50 In Women But Suppressed Anger Could Be Harming Your Health, Here's How

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Don't Let The Smiling 'Fit' Selfies On Social Media Fool You, Here's What Eating Disorders Can Look Like

eating disorders

Faith vs. Medicine: The Sleeping Prince’s 20-Year Battle Between Life, Death, and Coma Care

faith vs. medicine: the sleeping prince’s 20-year battle between life, death, and coma care

When 12-year-old Jody started struggling with everyday tasks—tripping over her own feet, fumbling with buttons, losing her balance—her mother, Sarah Levett, chalked it up to anxiety and autism. What they didn’t know at the time was that these small, seemingly unrelated signs were the first red flags of a devastating diagnosis: a fast-growing, aggressive Stage 4 brain tumor.

After a four-year fight, Jody passed away in 2022 at the age of 16. Her loss has left a permanent hole in her family’s life. Now, her mother is sharing Jody’s story, not just as a tribute but as a warning for other parents and caregivers to recognize the signs of brain tumors early—and to push for answers when things don’t feel right.

Jody’s symptoms began innocuously. During the summer holidays of 2018, she started taking longer to get dressed and found it increasingly difficult to do simple things like fasten buttons. At first, doctors attributed these delays to anxiety about returning to school.

But things progressed quickly. Within weeks, Sarah noticed her daughter bumping into objects, walking in a crooked line, and complaining of headaches and nausea. Jody also experienced mood swings, screaming fits, and facial twitching—symptoms that doctors later recognized as classic signs of a brain tumor.

It wasn’t until a second visit to the doctor that Jody was referred for a scan at the Royal Surrey Hospital. That scan revealed a mass in her brain. Within days, she was transferred to St George’s Hospital in London, where surgery removed about 80% of the tumor.

The shock of a cancer diagnosis was compounded by the unknown. Doctors couldn’t identify the exact type of brain tumor Jody had—even after multiple biopsies and surgeries. They could only tell the family that it was fast-growing and aggressive.

Sarah expressed deep frustration about the lack of clarity. “It’s so hard not knowing,” she said. “How can you treat something when you don’t even know what it is?”

This diagnostic uncertainty limited treatment options and made long-term planning nearly impossible. Sarah is now pursuing private testing on Jody’s biopsy samples, hoping they might yield new insights.

After the initial operation, Jody underwent chemotherapy and six weeks of radiotherapy. She missed most of the school year and struggled with common side effects—fatigue, nausea, and hair loss. To ease her discomfort, she shaved her head early and wore bandanas to school when she could attend.

Her resilience stood out. Jody loved school and insisted on staying engaged with her studies whenever possible, even when her body was failing her. Between hospital-based lessons and home tutoring, she did everything she could to stay connected to normal teenage life.

Sarah transferred Jody to a smaller school to better support her medical needs—a move that helped Jody remain involved in learning while managing treatments.

Fifteen months of clear scans gave the family cautious hope—until October, when a routine MRI revealed the tumor had returned. Jody underwent another surgery just before Christmas, followed by another round of radiotherapy and oral chemotherapy.

Then, in July, another tumor appeared. More surgery followed—this time complicated by focal seizures. Despite it all, Jody kept her focus on what mattered most to her: attending school and living life on her own terms.

“She has been through so much,” Sarah said. “But her main concern was whether she’d miss class.”

The emotional toll on the family has been immense. Sarah continues to manage grief, unanswered questions, and the feeling that the healthcare system is under-equipped to deal with rare pediatric cancers.

“There’s just not enough research,” she said. “Not enough awareness. Not enough support for families like ours.”

<h2>Subtle Signs of Brain Tumor In Kids</h2>

Brain tumors are the leading cause of cancer-related deaths among children and adolescents in many countries, yet they receive disproportionately low research funding. The symptoms can be subtle, dismissed as behavioral issues, migraines, or developmental delays—especially in kids. The early warning signs of brain tumors in children include:

<ul><li>Headaches (especially in the morning)</li><li>Unexplained vomiting</li><li>Balance and coordination issues</li><li>Vision changes</li><li>Behavioral shifts or mood swings</li><li>Delayed milestones in younger children</li></ul>

Sarah has turned her grief into action. She’s organizing a fundraiser for The Brain Tumour Charity, aiming to raise both money and awareness. She also advocates for stronger mental health support for bereaved families, another glaring gap in the current healthcare landscape.

“The main aim now is to stop this from happening to another family,” she said. “To make sure someone, somewhere, hears our story and recognizes the signs early enough to make a difference.”

Jody’s legacy isn’t just in the fight she endured but in the awareness her story now brings. Her quiet bravery, her love for school, and her unshakeable strength in the face of uncertainty have touched the lives of many—and may help save others.

For Sarah and families like hers, the battle doesn’t end with loss. It continues through every conversation, every campaign, and every effort to improve the system for those who come next. If you suspect something’s wrong with your child’s health—don’t wait. Ask questions, request scans, and push for answers. Early diagnosis saves lives.

cancer

rare brain tumor in children

childhood cancer symptoms

teen brain tumor story

early signs of brain tumor

brain tumor misdiagnosis

child health warning signs

brain tumor awareness

When 12-year-old Jody started struggling with everyday tasks—tripping over her own feet, fumbling with buttons, losing her balance—her mother, Sarah Levett, chalked it up to anxiety and autism. What they didn’t know at the time was that these small, seemingly unrelated signs were the first red flags of a devastating diagnosis: a fast-growing, aggressive Stage 4 brain tumor.After a four-year fight, Jody passed away in 2022 at the age of 16. Her loss has left a permanent hole in her family’s life. Now, her mother is sharing Jody’s story, not just as a tribute but as a warning for other parents and caregivers to recognize the signs of brain tumors early—and to push for answers when things don’t feel right.Jody’s symptoms began innocuously. During the summer holidays of 2018, she started taking longer to get dressed and found it increasingly difficult to do simple things like fasten buttons. At first, doctors attributed these delays to anxiety about returning to school.But things progressed quickly. Within weeks, Sarah noticed her daughter bumping into objects, walking in a crooked line, and complaining of headaches and nausea. Jody also experienced mood swings, screaming fits, and facial twitching—symptoms that doctors later recognized as classic signs of a brain tumor.It wasn’t until a second visit to the doctor that Jody was referred for a scan at the Royal Surrey Hospital. That scan revealed a mass in her brain. Within days, she was transferred to St George’s Hospital in London, where surgery removed about 80% of the tumor.The shock of a cancer diagnosis was compounded by the unknown. Doctors couldn’t identify the exact type of brain tumor Jody had—even after multiple biopsies and surgeries. They could only tell the family that it was fast-growing and aggressive.Sarah expressed deep frustration about the lack of clarity. “It’s so hard not knowing,” she said. “How can you treat something when you don’t even know what it is?”This diagnostic uncertainty limited treatment options and made long-term planning nearly impossible. Sarah is now pursuing private testing on Jody’s biopsy samples, hoping they might yield new insights.After the initial operation, Jody underwent chemotherapy and six weeks of radiotherapy. She missed most of the school year and struggled with common side effects—fatigue, nausea, and hair loss. To ease her discomfort, she shaved her head early and wore bandanas to school when she could attend.Her resilience stood out. Jody loved school and insisted on staying engaged with her studies whenever possible, even when her body was failing her. Between hospital-based lessons and home tutoring, she did everything she could to stay connected to normal teenage life.Sarah transferred Jody to a smaller school to better support her medical needs—a move that helped Jody remain involved in learning while managing treatments.Fifteen months of clear scans gave the family cautious hope—until October, when a routine MRI revealed the tumor had returned. Jody underwent another surgery just before Christmas, followed by another round of radiotherapy and oral chemotherapy.Then, in July, another tumor appeared. More surgery followed—this time complicated by focal seizures. Despite it all, Jody kept her focus on what mattered most to her: attending school and living life on her own terms.“She has been through so much,” Sarah said. “But her main concern was whether she’d miss class.”The emotional toll on the family has been immense. Sarah continues to manage grief, unanswered questions, and the feeling that the healthcare system is under-equipped to deal with rare pediatric cancers.“There’s just not enough research,” she said. “Not enough awareness. Not enough support for families like ours.”Subtle Signs of Brain Tumor In KidsBrain tumors are the leading cause of cancer-related deaths among children and adolescents in many countries, yet they receive disproportionately low research funding. The symptoms can be subtle, dismissed as behavioral issues, migraines, or developmental delays—especially in kids. The early warning signs of brain tumors in children include:Headaches (especially in the morning)Unexplained vomitingBalance and coordination issuesVision changesBehavioral shifts or mood swingsDelayed milestones in younger childrenSarah has turned her grief into action. She’s organizing a fundraiser for The Brain Tumour Charity, aiming to raise both money and awareness. She also advocates for stronger mental health support for bereaved families, another glaring gap in the current healthcare landscape.“The main aim now is to stop this from happening to another family,” she said. “To make sure someone, somewhere, hears our story and recognizes the signs early enough to make a difference.”Jody’s legacy isn’t just in the fight she endured but in the awareness her story now brings. Her quiet bravery, her love for school, and her unshakeable strength in the face of uncertainty have touched the lives of many—and may help save others.For Sarah and families like hers, the battle doesn’t end with loss. It continues through every conversation, every campaign, and every effort to improve the system for those who come next. If you suspect something’s wrong with your child’s health—don’t wait. Ask questions, request scans, and push for answers. Early diagnosis saves lives.

12-year-old teen dies from rare brain tumor after unusual early signs, grieving mother urges parents to watch for subtle symptoms

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