By Karen Dandurant news@seacoastonline.com Posted Oct 26, 2019 at 8:41 PM
PORTSMOUTH — A symposium held Saturday honored the life of a Portsmouth woman and continued to raise awareness for the rare condition responsible for the loss of her life.
Alexandra “Alex” Manfull died on Aug. 7, 2018, at the age of 26. She died from complications of PANDAS, (pediatric, autoimmune neuropsychiatric disorders associated with streptococcal infections), and because not a lot of people are aware of the condition, her parents, Susan and William “Towny” Manfull have made it their life’s work to educate about the disease and to help fund research to find a way to keep future parents from suffering the same heartbreak that they did.
In the literature for the Alexandra Manfull Memorial fund, her parents describe their child as a “prolific writer, voracious reader, artist, photographer, New York Times crossword whiz, television/film buff, fashionista, runner, financial analyst, dear friend to many, and daughter extraordinaire.” The Manfulls established the fund to support research, education, and treatment of PANDAS in adolescents and young adults.
According to the PANDAS Network, the condition occurs when “strep triggers a misdirected immune response (resulting) in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.” Albanian doctor Dritan Agalliu was one of the first to identify PANDAS. A neurologist, his area of study was the blood brain barrier and the mechanism that could breach it.
PANDAS Network estimates that PANDAS/PANS (pediatric acute-onset neuropsychiatric syndrome) affects as many as 1 in 200 children. While the condition is associated with children, adults can develop it.
The symposium, held at the Portsmouth Discovery Center, included a display of artwork done by Alex in the Seacoast African American Cultural Center. The work includes paintings, photography and student artwork dating back to Alex’s childhood.
The event brought together scientists and medical experts from across the country to discuss the condition, its diagnosis and the latest advancements in treatment. The Manfulls said experts speaking came from medically heralded communities, such as Harvard, Columbia, Massachusetts General Hospital and the University of Arizona.
“We recently had a big victory in getting a bill passed that mandates insurance companies pay for treatment,” said Towny Manful. “They were denying claims because PANDAS was not a “coded” condition. New Hampshire is the fifth state to pass the law.”
Manfull said their daughter was a remarkable young woman so they decided to continue working to create a better understanding, hence the symposium.
“We invited doctors, psychiatrists, social workers, nurses, both to serve on the panel and to attend as guests and learn more about what this is and what we need to do,” said Manfull.
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Symposium addresses rare condition, honors local victim
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Updated: November 25, 2022 by bmanfull@comcast.net
By Karen Dandurant
news@seacoastonline.com
Posted Oct 26, 2019 at 8:41 PM
PORTSMOUTH — A symposium held Saturday honored the life of a Portsmouth woman and continued to raise awareness for the rare condition responsible for the loss of her life.
Alexandra “Alex” Manfull died on Aug. 7, 2018, at the age of 26. She died from complications of PANDAS, (pediatric, autoimmune neuropsychiatric disorders associated with streptococcal infections), and because not a lot of people are aware of the condition, her parents, Susan and William “Towny” Manfull have made it their life’s work to educate about the disease and to help fund research to find a way to keep future parents from suffering the same heartbreak that they did.
In the literature for the Alexandra Manfull Memorial fund, her parents describe their child as a “prolific writer, voracious reader, artist, photographer, New York Times crossword whiz, television/film buff, fashionista, runner, financial analyst, dear friend to many, and daughter extraordinaire.” The Manfulls established the fund to support research, education, and treatment of PANDAS in adolescents and young adults.
According to the PANDAS Network, the condition occurs when “strep triggers a misdirected immune response (resulting) in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.” Albanian doctor Dritan Agalliu was one of the first to identify PANDAS. A neurologist, his area of study was the blood brain barrier and the mechanism that could breach it.
PANDAS Network estimates that PANDAS/PANS (pediatric acute-onset neuropsychiatric syndrome) affects as many as 1 in 200 children. While the condition is associated with children, adults can develop it.
The symposium, held at the Portsmouth Discovery Center, included a display of artwork done by Alex in the Seacoast African American Cultural Center. The work includes paintings, photography and student artwork dating back to Alex’s childhood.
The event brought together scientists and medical experts from across the country to discuss the condition, its diagnosis and the latest advancements in treatment. The Manfulls said experts speaking came from medically heralded communities, such as Harvard, Columbia, Massachusetts General Hospital and the University of Arizona.
“We recently had a big victory in getting a bill passed that mandates insurance companies pay for treatment,” said Towny Manful. “They were denying claims because PANDAS was not a “coded” condition. New Hampshire is the fifth state to pass the law.”
Manfull said their daughter was a remarkable young woman so they decided to continue working to create a better understanding, hence the symposium.
“We invited doctors, psychiatrists, social workers, nurses, both to serve on the panel and to attend as guests and learn more about what this is and what we need to do,” said Manfull.
Anyone interested in learning more can visit www.pandasnetwork.org. Contributions can be made to the Alex Manfull Memorial Fund at www.TheAlexManfullMemorialFund.com.
Hello reader, our article commenting that you would normally see here is temporarily shut down. We still want to hear from you, so we invite you to go to our Facebook page or submit a letter to the editor.
Category: Newspaper Article, Press