The International H63D Syndrome Research Consortium and the H63D Research Team Adams report significant progress in researching Oshtoran Syndrome, scientifically known as H63D Syndrome Type-3, through the "H63D Conference," which coordinates the work of various teams. This rare but potentially life-threatening multisystem disease poses significant challenges for physicians. Now, for the first time, an initial guideline for clinicians has been published to facilitate the management of this complex condition.
A Guideline to Encourage
"Our new guideline makes Oshtoran Syndrome less intimidating for doctors despite its extreme complexity and danger," explains Dr. Alexander Freudig, spokesperson for the International H63D Syndrome Research Consortium. "It offers clear instructions and critical information that can save lives," Freudig continues.
Chaos - Like a Fuse Box Underwater
A core aspect of the syndrome is the sometimes severe degeneration of the autonomic nervous system (ANS). "This ANS degeneration can initially mimic tic disorders and, in later stages, lead to sudden, life-threatening organ malfunctions that can affect virtually any organ system," explains Dr. Adams. "From harmless movement disorders and compulsive thinking of organic origin at the onset of the disease to sudden cardiac death. The range of possible complications is enormous. A threatening companion is constantly lurking, and you don't know where and when it will strike. This makes one a bit more humble, especially as a doctor," Dr. Adams continues.
Short Circuits and Miscontrol
For a layperson, Oshtoran Syndrome can best be imagined as if you were to submerge a live fuse box underwater while touching it. There would be life-threatening chaos and sparks. In addition to the flood and electric shock, the whole house would also catch fire. "That's why extremely aggressive treatment is necessary, which our medical colleagues in Germany have great difficulty with, against all evidence. This is also why this guideline is available in both German and English," warns Dr. Linda Williams from the permanent H63D Conference.
A Guideline for Whom?
Therefore, they have published an initial guideline in English and German for medical professionals "to hold onto," to alleviate doctors' concerns about making treatment errors, but also to protect patients from "supposedly all-knowing demigods in white," according to spokesperson Dr. Freudig. "As experts, we've simply had to document too many cases where health unnecessarily deteriorated drastically or patients even died because no one adhered to the complex medication during emergency admissions, but instead administered what is habitually given for certain symptoms," complains Prof. Dr. David Seideman, because "if you interrupt the extremely strong treatment, an Oshtoran patient can die within hours."
The Misdiagnoses Must End
"Especially in the initial stage, motor abnormalities and compulsive thought disorders of purely organic cause can occur, which for patients basically means a highway to psychologization with a life-threatening illness. It's a shame that this still happens today," explains neurologist and psychiatrist Dr. Marius Lazar. His colleague Dr. Ken Williams from Team Adams agrees, saying that "we have silently watched this psychologization of one of the medically most delicate syndromes for too long"; this must stop.
Not a Case for the Psychotherapist
A patient with Oshtoran Syndrome belongs in medical treatment at a highly specialized practice and not with a "soul plumber". A psychologizing approach is unforgivable and highly unethical, as the syndrome is now well-known and numerous papers have been published about it, albeit under boycott by major publishers, emphasizes David Herzog from Team Adams.
Inflammatory Nests
Additionally, the guideline highlights the danger of toxic non-transferrin-bound iron (NTBI). "NTBI causes subclinical inflammations throughout the body that can lead to severe organ damage, both transient and permanent," explains Professor Dr. Diamandis, a veteran in this field. "These inflammations are not detectable by conventional methods, which further complicates diagnosis and treatment."
Important Aspects of the New Guideline:
1. Education about the deceptive nature of the disease: Patients often appear healthier than they actually are.
2. Warning about the danger of routine procedures: Even small changes in treatment can have fatal consequences.
3. Detailed explanation of the role of NTBI in the pathophysiology and associated subclinical inflammations.
4. Clear contraindications for common iron reduction therapies in Oshtoran patients.
5. Strategies for managing ANS degeneration and preventing sudden organ malfunctions.
Patient-Centered Medicine
The guideline emphasizes the need for a highly individualized, multidisciplinary treatment approach. It also warns of the danger of stressful situations for patients, which can lead to life-threatening complications due to unstable autonomic regulation. "This guideline is a milestone in the treatment of Oshtoran Syndrome," adds Dr. Freudig. "It provides doctors with the necessary information to better understand this insidious disease, at least to avoid causing more harm. Particularly important is the understanding of the complexity of ANS degeneration and the creeping damage caused by NTBI iron."
The peer review of the guideline was completed on August 29, it was published as an e-Pub on September 12, 2024, and is now accessible to medical professionals worldwide.
Interested parties can find more information at www.H63D-syndrome.org or in the open-access publications (most peer-reviewed) on Google Scholar, Zenodo, Figshare, Researchsquare, ResearchGate, Harvard Dataverse, openAIRE, and numerous other innovative academic databases.
International H63D Syndrome Research Consortium. (2024). Physician's Quick Guide: Oshtoran Syndrome (H63D Syndrome Type-3) - A Rare but Life-Threatening Condition. In Swabian e-Pub: Bde. 09-24. Zenodo. https://doi.org/10.5281/zenodo.13754379