Understanding DNET Brain Tumors
- A woman, 37, was misdiagnosed as a child with epilepsy after she suffered frequent seizures for years.
- After eventually being diagnosed with a brain tumor, she is raising awareness on the warning signs and supporting others battling the disease.
- A dysembryoplastic neuroepithelial tumor (DNET) or ganglioglioma mostly impacts young people 20 years old or younger. It impacts thought, movement, and sensation.
- DNET or ganglioglioma are "generally benign," according to researchers within the Journal of Neuro-Oncology.
- DNET are rare, slow-growing tumors accounting for "less than 1-2% of brain tumors," according to Children's Minnesota Hospital.
A woman, 37, is raising awareness on the important warning signs of brain tumors after she was misdiagnosed with epilepsy as a child due to the seizures she suffered.
Clare Danswan explained she suffered from regular seizures and lapses of consciousness during her early childhood.
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Danswan said it wasn't until she turned 11 that was she correctly diagnosed with dysembryoplastic neuroepithelial tumor (DNET).
Boston Children's Hospital describes dysembryoplastic neuroepithelial tumor as a "low-grade, slow-growing brain tumor." The tumor usually occurs in children and teenagers 20 years old and younger.
Danswan had surgery two years after being diagnosed to remove the tumor, which helped bring her much-needed relief.
"I was given the choice to have surgery as the tumor was a low-grade, but I was told there was a small chance it could turn into something more aggressive," she said.
"Almost two decades after my diagnosis, I live a normal and full life," Danswan added as she now works as a warehouse worker and guitar teacher.
She recently decided to shave her head to support others battling the same disease she had.
What Is a Dysembryoplastic Neuroepithelial Tumor (DNET)?
A dysembryoplastic neuroepithelial tumor or ganglioglioma contains properties of both glial and neuronal cells, according to Boston Children's Hospital. These nervous system cells support brain functioning.
DNET tumors are "generally benign" as noted by researchers within the Journal of Neuro-Oncology. DNET causes seizures and typically impacts thought, movement, and sensation.
These slow-growing tumors are rare, accounting for "less than 1-2% of brain tumors," according to Children's Minnesota Hospital. Interestingly, these tumors "do not have a capacity to metastasize or spread beyond the primary site of origin.”
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Doctors can diagnose DNETs with a neurological exam, CT, or MRI scans.
DNET and Epilepsy Have Similar Symptoms
Clare Danswan was initially misdiagnosed with epilepsy, but it’s easy to see why the doctors may have thought that was the condition she had. Seizures can be a symptom of both epilepsy and DNET.
However, unlike epilepsy, DNET-related seizures don't respond to seizure medication, Boston Children's said.
As rare as DNET is, epilepsy is more common. According to the Epilepsy Foundation, "one in 26 people will develop epilepsy in their lifetime."
Mayo Clinic says seizure symptoms for epilepsy may include:
- Temporary confusion
- A staring spell
- Still muscles
- Uncontrollable jerking movements of the arms and legs
- Loss of consciousness
- Feelings of fear, anxiety
How Are DNETs Treated?
DNET and ganglioglioma are often treated with surgery where doctors completely remove the tumor. Minnesota Children’s said the majority of DNET patients are "cured of their disease following the first surgery."
It added, "There is no role for chemotherapy or radiation therapy."
Radiation and chemotherapy are not used because the tumor is benign, according to Boston Children's Hospital.
Expert Resources for Dealing With a Diagnosis
As a DNET survivor, Clare Danswan has since dedicated part of her life to spreading awareness of brain tumors. She shaved her head to raise money for brain tumor research.
"I'm getting used to the shaved head now," Danswan said.
"I felt a duty to do this fundraiser as not everyone will have this happy ending, so I'm doing it in their memory and to show support for those currently undergoing treatment and diagnosis," she added.
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