SC is the bastard child of RF and there is no international surveillance of this illness or PANDAS. And in SC, as well, no treatment ever universally decided on. SC is often self-limiting within six months however 40% of the time children have issues for a lifetime. SC is considered the #1 cause of
acquired neuropsychiatric illness. Below are a few excerpts that are bombshells and imply action is needed by world health organizations.
Dr. Katherine Walker had (she has retired recently) a surveillance center for Rheumatic Fever in Cape Town, South Africa. She estimated 15 million worldwide have RF. In the first report ever of someone “boots on the ground with SC and RF," Walker states that in the Third World (which is much larger than the U.S. population), “We recommend that the diagnosis and monitoring of these 2 conditions not be differentiated at primary health care levels. Given the high prevalence of rheumatic heart disease, an approach that includes
Sydenham chorea and PANDAS as being on the same spectrum, under the umbrella of post-streptococcal neuropsychiatric movement disorders, may provide a safety net that avoids missed diagnoses” (page 852).
And, “Despite more than 3 centuries of experience [with Sydenham], no expert consensus guideline has been established using current methods of guideline formulation" (page 857).
The take away from this is – research money and particularly, in Basic Research to prove and find the mechanisms are crucial or the clinical debates will rage on.
PN is working on creating collaborative fundraising efforts with our Community Partners for each region and potential Center of Excellence in the U.S. and we will share with you dollars and cents needed to move this debate forward.
We must persist.