By Shawne K. Wickham, Special to the Union Leader | Dec 20, 2024
Alexandra “Alex” Manfull was bright and beautiful, clever and creative, with a promising future ahead of her.
She was just 26 when she died, the victim of a mysterious illness that hijacked her brilliant mind and broke her parents’ hearts.
In the six years since Alex’s death, her parents, Susan and Bill “Towny” Manfull of Portsmouth, have devoted themselves to spreading awareness of, and research into, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, commonly called PANDAS.
Since the death of their daughter, Alex, from PANDAS, Susan and Towny Manfull have devoted themselves to spreading awareness of the illness and encouraging research. Photo credit: Shawne K. Wickham
“We don’t want this to happen to another person or family,” Towny Manfull said.
The cute acronym belies the terrible nature of the illness. PANDAS and a related disorder, Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), are characterized by sudden-onset psychiatric symptoms, notably obsessive-compulsive disorder, tics and anxiety, following an infection such as strep throat or scarlet fever.
The bacteria that causes such infections can hide in the body by mimicking other molecules. Eventually, the body recognizes them as foreign, triggering an immune response. But the immune system also attacks the body’s own tissues, and when that includes the brain, it can set off neuro-psychiatric symptoms.
The disorder typically appears in childhood. But for Alex Manfull, it struck when she was in college.
“Our daughter was the center of our lives,” said Susan Manfull, a social psychologist. “She was a real force. From the very beginning, she had a personality that really lit up the room.”
As a child, Alex Manfull published a local newsletter in Portsmouth.Photo credit: Shawne K. Wickham
In elementary school, young Alex wrote and published a neighborhood newsletter, complete with local news and advertising. She won New Hampshire Public Television’s “Reading Rainbow” contest, and her story was animated and shown on television. She was interviewed by personality Don Imus on his radio show — twice.
“She had an awesome sense of humor and this big laugh,” Susan Manfull said. “She really was a very happy child.”
As Alex got older, her creativity only grew. A writer, artist and photographer, fluent in French, she attended Phillips Exeter Academy. The summer before college, she traveled to Jordan to study Arabic through a State Department program.
She came home from Jordan with strep throat, and was treated with antibiotics. Her parents weren’t worried.
Alex went on to Princeton University, where she was a coxswain on the crew team. In her sophomore year, she got mononucleosis and a second strep infection, and she seemed to be responding to the antibiotic treatment.
“But it was shortly after that, she began exhibiting symptoms that no one, including us, recognized as anything other than stress in college,” Susan Manfull said.
As a youngster, Alex Manfull was interviewed by radio personality Don Imus.Photo credit: Shawne K. Wickham
Beginning to understand
PANDAS/PANS is a continuum. Symptoms ebb and flow; they can be mild and then become incapacitating in what are called “flares,” Susan Manfull said.
And that’s what happened to Alex.
She began developing anxiety, insomnia and skin problems. What she didn’t tell her parents until later was that she was having symptoms of obsessive compulsive disorder, including counting her steps.
All this was affecting her schoolwork. She had trouble finishing long exams, and was late turning in papers.
Her parents now know that PANDAS accounts for everything Alex was experiencing.
“There’s a lot of symptoms that you have to connect the dots,” Towny Manfull said. “And today, very few clinicians have the skill or the experience to look at all these different symptoms and say, ‘Why did this start?’”
Alex was diagnosed with OCD and prescribed anti-anxiety medication. She graduated from college and moved to New York City, working as a financial analyst.
But her parents noticed changes in her personality. Their easy-going daughter easily became irritated. “She had a really short fuse. She was tired all the time because she didn’t sleep, but also she was working all those long hours,” her mother said.
Then Alex went to work for a hedge fund where, as part of her research, she came across some information about PANDAS.
Explanation at last
She called her parents. “She said, ‘I think I know what I have,’” Susan Manfull said. “I still remember it so vividly but I also remember thinking: PANDAS? Really?”
The name does a disservice, she now believes. Dartmouth Health, a leader in research and treatment, uses the term “neuro-immune psychiatric disorder,” and has established a clinic by that name, she said.
Alex was elated to have an explanation for her diverse, debilitating symptoms, Susan Manfull said. When Alex moved to Washington, D.C., she made an appointment with a neurologist who was very knowledgable about PANDAS, and who told Alex she was certain that’s what she was dealing with.
“Alex was thrilled, and she said, ‘When I get better, I’m going to tell everybody about this,’” she said. “We laughed about who was going to write the New Yorker article.”
The Manfulls had no idea how severe the illness can be, she said. “At the time there was just nothing in the literature about having these intrusive thoughts to take your life, or self-injurious types of behaviors.”
But one evening, Alex started texting Susan. She had been sick and had taken antibiotics, but she told her mom, “There’s something really wrong. This is really different.”
Susan promised to fly down the next day. She called Alex the next morning, but her daughter was upset and hung up on her, something she’d never done before. She tried to call Alex back, but there was no answer.
“I never talked to her again,” she said.
“We didn’t realize how unwell she was,” she said. “She ended up engaging in behaviors that took her life.”
They do not believe their daughter intended to harm herself. What makes them so sure?
“A lifetime of knowing this young woman,” Towny Manfull said. “This was not her. She was a fighter.”
“The day before this, she was looking forward to getting her treatment and changing the way people see this disorder.”
Acting on impulse
That morning, Alex had ordered a battery charger on Amazon and looked at a couch on Craig’s List. And a bag packed with equipment for a soccer league she had joined with work colleagues was sitting by the door. “So this was clearly something that came suddenly,” Towny Manfull said.
Susan Manfull displays a cherished keepsake, an illustrated story that her daughter Alex wrote in third grade that won New Hampshire Public Television’s “Reading Rainbow” contest.Photo credit: Shawne K. Wickham
Experts have since explained to the Manfulls that’s what can happen. “They have a flare and… they get these intrusive thoughts that tell them to take their lives,” Susan Manfull said. “They are so compelling that they can’t resist them and they act on them in an impulsive manner.”
“I’m positive that is what happened to her.”
They have talked with other parents with heartbreakingly similar stories. “There are young kids who end up dying because they listened to these intrusive thoughts,” Susan Manfull said.
Parents say the symptoms of PANDAS/PANS come on suddenly. “They put their child to bed and their child woke up a different person,” she said. “Or they come home from school and they are a drastically different person.”
The Manfulls have also talked with young people who have PANDAS. “Most of the time when they have these flares, they have no recollection of what happened,” Towny Manfull said. “It really is bypassing the executive level of the brain.”
“I think that’s the scariest part of this,” he said. “As a parent, it’s your worst fear.”
Alex’s legacy
Their only child’s sudden death galvanzied them to action. “If this can happen with Alex Manfull, this can happen to anybody,” Susan said.
They created the Alex Manfull Fund, which supports research into these disorders, produces a podcast and newsletter, and does legislative outreach. They sponsor symposiums for clinicians, researchers, advocates and policymakers to explore the latest treatment and diagnostic information.
The theme of a symposium they hosted last month was “Dialogue Saves Lives.” It takes a multi-disciplinary team to properly identify and treat this illness, Susan Manfull said.
One guest speaker, Dr. Richard Morse, a pediatric neurologist at Dartmouth Health Children’s, said the abrupt onset of OCD and tics is an important clue. “This is really lightning quick, over the course of a day, or two at the most,” he said.
The illness can progress to include mood disorders, behavioral regression, deterioration of cognitive functioning and suicidal ideation, Morse said, so early diagnosis can make a huge difference. Otherwise, he said, “It may end in great despair and a loss of a life.”
So much about these disorders remains a mystery, Towny Manfull said. “What we don’t know still today is why do some people get strep regularly and never have any adverse effect, and then other kids do have it,” he said. “So I think it’s still complicated, and we don’t have answers for that.”
And that’s why teaching medical and mental health providers to recognize the symptoms is so critical, his wife said. “If the infection and the immune system are not treated, you will continue to have this, and it will get worse and much more difficult to treat,” she said.
“Our vision is that no one else will ever lose their life, or lose years of their life … to find the right treatment,” she said.
At last month’s symposium, Susan Manfull invited the audience to “imagine a world without PANS and PANDAS.”
“I think that we will always have psychiatric symptoms, but imagine that we caught them early enough so that we diagnosed them early and they were treated effectively and resolved,” she said. “And the person with those symptoms can go back and live a healthy life.”
“We can do this,” Manfull said. “We can change the world. And we are here today to start that.”
PANDAS: A cute name for a terrible illness that claimed a beautiful life
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Posted: December 22, 2024 by bmanfull@comcast.net
By Shawne K. Wickham, Special to the Union Leader | Dec 20, 2024
Alexandra “Alex” Manfull was bright and beautiful, clever and creative, with a promising future ahead of her.
She was just 26 when she died, the victim of a mysterious illness that hijacked her brilliant mind and broke her parents’ hearts.
In the six years since Alex’s death, her parents, Susan and Bill “Towny” Manfull of Portsmouth, have devoted themselves to spreading awareness of, and research into, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, commonly called PANDAS.
“We don’t want this to happen to another person or family,” Towny Manfull said.
The cute acronym belies the terrible nature of the illness. PANDAS and a related disorder, Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), are characterized by sudden-onset psychiatric symptoms, notably obsessive-compulsive disorder, tics and anxiety, following an infection such as strep throat or scarlet fever.
The bacteria that causes such infections can hide in the body by mimicking other molecules. Eventually, the body recognizes them as foreign, triggering an immune response. But the immune system also attacks the body’s own tissues, and when that includes the brain, it can set off neuro-psychiatric symptoms.
The disorder typically appears in childhood. But for Alex Manfull, it struck when she was in college.
“Our daughter was the center of our lives,” said Susan Manfull, a social psychologist. “She was a real force. From the very beginning, she had a personality that really lit up the room.”
In elementary school, young Alex wrote and published a neighborhood newsletter, complete with local news and advertising. She won New Hampshire Public Television’s “Reading Rainbow” contest, and her story was animated and shown on television. She was interviewed by personality Don Imus on his radio show — twice.
“She had an awesome sense of humor and this big laugh,” Susan Manfull said. “She really was a very happy child.”
As Alex got older, her creativity only grew. A writer, artist and photographer, fluent in French, she attended Phillips Exeter Academy. The summer before college, she traveled to Jordan to study Arabic through a State Department program.
She came home from Jordan with strep throat, and was treated with antibiotics. Her parents weren’t worried.
Alex went on to Princeton University, where she was a coxswain on the crew team. In her sophomore year, she got mononucleosis and a second strep infection, and she seemed to be responding to the antibiotic treatment.
“But it was shortly after that, she began exhibiting symptoms that no one, including us, recognized as anything other than stress in college,” Susan Manfull said.
Beginning to understand
PANDAS/PANS is a continuum. Symptoms ebb and flow; they can be mild and then become incapacitating in what are called “flares,” Susan Manfull said.
And that’s what happened to Alex.
She began developing anxiety, insomnia and skin problems. What she didn’t tell her parents until later was that she was having symptoms of obsessive compulsive disorder, including counting her steps.
All this was affecting her schoolwork. She had trouble finishing long exams, and was late turning in papers.
Her parents now know that PANDAS accounts for everything Alex was experiencing.
“There’s a lot of symptoms that you have to connect the dots,” Towny Manfull said. “And today, very few clinicians have the skill or the experience to look at all these different symptoms and say, ‘Why did this start?’”
Alex was diagnosed with OCD and prescribed anti-anxiety medication. She graduated from college and moved to New York City, working as a financial analyst.
But her parents noticed changes in her personality. Their easy-going daughter easily became irritated. “She had a really short fuse. She was tired all the time because she didn’t sleep, but also she was working all those long hours,” her mother said.
Then Alex went to work for a hedge fund where, as part of her research, she came across some information about PANDAS.
Explanation at last
She called her parents. “She said, ‘I think I know what I have,’” Susan Manfull said. “I still remember it so vividly but I also remember thinking: PANDAS? Really?”
The name does a disservice, she now believes. Dartmouth Health, a leader in research and treatment, uses the term “neuro-immune psychiatric disorder,” and has established a clinic by that name, she said.
Alex was elated to have an explanation for her diverse, debilitating symptoms, Susan Manfull said. When Alex moved to Washington, D.C., she made an appointment with a neurologist who was very knowledgable about PANDAS, and who told Alex she was certain that’s what she was dealing with.
“Alex was thrilled, and she said, ‘When I get better, I’m going to tell everybody about this,’” she said. “We laughed about who was going to write the New Yorker article.”
The Manfulls had no idea how severe the illness can be, she said. “At the time there was just nothing in the literature about having these intrusive thoughts to take your life, or self-injurious types of behaviors.”
But one evening, Alex started texting Susan. She had been sick and had taken antibiotics, but she told her mom, “There’s something really wrong. This is really different.”
Susan promised to fly down the next day. She called Alex the next morning, but her daughter was upset and hung up on her, something she’d never done before. She tried to call Alex back, but there was no answer.
“I never talked to her again,” she said.
“We didn’t realize how unwell she was,” she said. “She ended up engaging in behaviors that took her life.”
They do not believe their daughter intended to harm herself. What makes them so sure?
“A lifetime of knowing this young woman,” Towny Manfull said. “This was not her. She was a fighter.”
“The day before this, she was looking forward to getting her treatment and changing the way people see this disorder.”
Acting on impulse
That morning, Alex had ordered a battery charger on Amazon and looked at a couch on Craig’s List. And a bag packed with equipment for a soccer league she had joined with work colleagues was sitting by the door. “So this was clearly something that came suddenly,” Towny Manfull said.
Experts have since explained to the Manfulls that’s what can happen. “They have a flare and… they get these intrusive thoughts that tell them to take their lives,” Susan Manfull said. “They are so compelling that they can’t resist them and they act on them in an impulsive manner.”
“I’m positive that is what happened to her.”
They have talked with other parents with heartbreakingly similar stories. “There are young kids who end up dying because they listened to these intrusive thoughts,” Susan Manfull said.
Parents say the symptoms of PANDAS/PANS come on suddenly. “They put their child to bed and their child woke up a different person,” she said. “Or they come home from school and they are a drastically different person.”
The Manfulls have also talked with young people who have PANDAS. “Most of the time when they have these flares, they have no recollection of what happened,” Towny Manfull said. “It really is bypassing the executive level of the brain.”
“I think that’s the scariest part of this,” he said. “As a parent, it’s your worst fear.”
Alex’s legacy
Their only child’s sudden death galvanzied them to action. “If this can happen with Alex Manfull, this can happen to anybody,” Susan said.
They created the Alex Manfull Fund, which supports research into these disorders, produces a podcast and newsletter, and does legislative outreach. They sponsor symposiums for clinicians, researchers, advocates and policymakers to explore the latest treatment and diagnostic information.
The theme of a symposium they hosted last month was “Dialogue Saves Lives.” It takes a multi-disciplinary team to properly identify and treat this illness, Susan Manfull said.
One guest speaker, Dr. Richard Morse, a pediatric neurologist at Dartmouth Health Children’s, said the abrupt onset of OCD and tics is an important clue. “This is really lightning quick, over the course of a day, or two at the most,” he said.
The illness can progress to include mood disorders, behavioral regression, deterioration of cognitive functioning and suicidal ideation, Morse said, so early diagnosis can make a huge difference. Otherwise, he said, “It may end in great despair and a loss of a life.”
So much about these disorders remains a mystery, Towny Manfull said. “What we don’t know still today is why do some people get strep regularly and never have any adverse effect, and then other kids do have it,” he said. “So I think it’s still complicated, and we don’t have answers for that.”
And that’s why teaching medical and mental health providers to recognize the symptoms is so critical, his wife said. “If the infection and the immune system are not treated, you will continue to have this, and it will get worse and much more difficult to treat,” she said.
“Our vision is that no one else will ever lose their life, or lose years of their life … to find the right treatment,” she said.
At last month’s symposium, Susan Manfull invited the audience to “imagine a world without PANS and PANDAS.”
“I think that we will always have psychiatric symptoms, but imagine that we caught them early enough so that we diagnosed them early and they were treated effectively and resolved,” she said. “And the person with those symptoms can go back and live a healthy life.”
“We can do this,” Manfull said. “We can change the world. And we are here today to start that.”
Category: Newspaper Article, Online Article, Press Tags: PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, Postinfectious Autoimmune Basal Ganglia Encephalitis, Susan Manfull