Dear
Friend,
Our daughter, Alexandra Manfull, died on August 7th, 2018, just one month before her 27th birthday, and less than one month after being diagnosed with PANDAS by one of the top neurologists in our country. Her prognosis for a full recovery was excellent. She had begun one component of her treatment and was slated to begin the other within a week. Instead, probably due to an infection contracted a few days earlier, she suddenly experienced a massive “flare” in her brain which led to her death.
In the profoundly sad aftermath of our only child’s death, we struggled with how to cope with our tremendous loss and the knowledge that her death would not have occurred had we all known more. Had there been more doctors and mental health professionals who could recognize PANDAS and treat it, and more research to develop effective treatments, Alex would be writing this appeal letter.
As we began to meet parents and their children with PANDAS, as well as adolescents and young adults with this disorder, we quickly learned how widespread it is –in our own country and around the world. We learned how devastating PANDAS and its companion disorder, PANS, can be. We learned a lot that I wish we would have known sooner.
What
is PANDAS? An inappropriately cute acronym -- Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus – for an autoimmune encephalitis (AE) in which the body’s immune system, triggered by strep, erroneously attacks healthy brain cells, causing inflammation of the brain which, in turn, leads to the sudden onset of neuropsychiatric symptoms. It is part of a broader category of neurological disorders called PANS (Pediatric Acute Neuropsychiatric Syndrome) in which there is an acute onset of neuropsychiatric symptoms, but the etiological trigger is unclear. The symptoms include, but are not limited to, obsessions and compulsions, tics, eating disorders, separation anxiety, social anxiety, mood swings, attention deficits, violent outbursts completely incongruent to temperament, sleep disruptions and other somatic symptoms. Left untreated, symptoms wax and wane across time. As the names suggest, the disorders are more likely to occur in children, but they can and do occur in adolescents and young adults.
Some researchers suggest 1 in 200 children suffer from PANDAS/PANS. If we only count the hundreds and hundreds of people that we alone have met who suffer from these disorders, that is far too many. Alex understood how imperative it is that this cause garner more support, and told us that, when she was herself again, she wanted to write and speak about PANDAS so that other people do not have to spend so many years wondering what is wrong with them. Tragically, she did not live to do this.
In September 2018, in honor of Alex’s amazing life and in recognition of what she wanted to do once she felt better, we created the Alex Manfull Memorial Fund Supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults. This past year, we dived right in to raise awareness and educate physicians, psychologists, and other practitioners about PANDAS/PANS across all age groups and to increase treatment options for PANDAS/PANS in all age groups. For example:
- We organized and carried out an all-day symposium for over 90 medical and mental health practitioners and parents to learn more about PANDAS/PANS from the nation’s top researchers and practitioners.
- Susan testified before the Commerce and Consumer Affairs Committee of the New Hampshire House of Representatives in support of a bill requiring insurance companies to cover treatment for PANDAS/PANS. NH Senate Bill 224 was passed and was signed by the Governor, making New Hampshire only the fifth state in the country to require insurance coverage of these disorders.
In 2020, our goals are to continue to raise awareness about PANDAS/PANS/AE and how to effectively treat it, and we will actively support research in this area by expanding our efforts to include:
- Working with psychologists and other mental health workers whose clients may appear to have obsessive compulsive disorder or anorexia, for example, but really have PANDAS/PANS. These patients typically do not get better with the usual psychiatric drugs because the etiology is likely immunologically related and involves brain inflammation. We want to remind practitioners to screen for such triggers by incorporating questions into their initial interviews such as, “Have you recently had strep?” or “Have you ever been bitten by a tick?” or “Have you had the flu?” and, if necessary, to arrange for medical tests to investigate further. Such simple questions may save clients from years of suffering.
- Carrying out pilot programs in Emergency Rooms and University Health Centers that would encourage practitioners to inform patients they have treated for viral or bacterial infections to seek medical attention should they experience a sudden onset of psychiatric symptoms following their infection. The goal is to hasten appropriate treatment, preventing years of suffering.
- Publishing lay and professional papers and posting on social media more information about PANDAS/PANS.
- Constructing and distributing a questionnaire to further understand PANDAS/PANS in post-pubertal patients.
- Funding research projects, case study papers, and post-doctoral positions dedicated to advancing research in PANDAS/PANS.
- Encouraging further examination of the pathological features of Alex’s brain, the only known brain diagnosed with PANDAS in our country and, likely, in the world. The Lab of Pathology at National Institutes of Health (NIH) provided a “Preliminary Anatomic Diagnosis” of Alex’s brain; it revealed damage in the basal ganglia region of Alex’s brain and a review of this report by outside experts in neurology, psychiatry, and neuroscience strongly suggests that studying her brain will advance the understanding of PANDAS and PANS.
It was Alex’s fervent wish to save others from enduring the horrific consequences of PANDAS and PANS. It is our impassioned goal to prevent more lives from being lost due to these disorders. Any gift you send will make a huge difference – to those already diagnosed with PANDAS, PANS or Autoimmune Encephalitis, and to those searching for help for their not yet diagnosed symptoms.
Please make a donation today to The Alex Manfull Memorial Fund which is part of PANDAS Network, a 501 (c)(3) non-profit corporation dedicated to improving the diagnosis and treatment of PANDAS/PANS around the globe. All donations made to PANDAS Network/Alex Manfull Fund are tax deductible.
We are grateful for your kindness and support.
Very Sincerely,
