Histiocytic Disorders are a group of oncological and hematological diseases that afflict mainly children and occasionally adults. They first became known at the beginning in 1868 by Paul Langerhans (1847-1888). They occur when the body over-produces white blood cells known as histiocytes – a type of cells that help destroy foreign particles or infections.
Histiocytic Disorders are considered an “orphan disease.” Nonetheless, there is a global web of support and an international community dedicated to finding a reasonable cure. Notably, the Nikolas Symposium – the leading scientific think tank dedicated to the particular disorders – annually invites esteemed scientists, researchers and medical practitioners from all over the world to examine, deliberate and debate the pathogenesis and structure of Histiocytic Disorders.
Histiocytic Disorders are also known as Histiocytosis –X, eosinophilic granuloma, Hand-Schuller-Christian syndrome, Hashimoto-Pritzker syndrome and Letterer-Siwe disease.
In Greece, the disorders are treated in oncological-hematological centers of pediatric hospitals. The Adult Clinic at Laiko Hospital of Athens as well as the 251 Air Force General Hospital handle adults afflicted with Histocytic Disorders.
Symptoms
The disorders may appear on a single organ or on multiple areas of the patient’s body. Naturally, when more areas are inflicted the condition is considered more serious. Also, younger patients are considered frailer. Some possible symptoms may be found in areas such as:
- Skin (rash)
- Bones (single or multiple corruption)
- Lung, liver or spleen (malfunction)
- Teeth and gums (swelling, or falling)
- Ears (chronic disorder or discharge)
- Eyes (enlarged eyes, sight issues)
- Central nervous system (cerebellar difficulty in movement, paralysis, difficulty in learning or communicating, memory loss, intense thirst and urination, diabetes insipidus)
Some additional general symptoms are high fever, feeling of weakness, insufficient body weight gain, insufficient muscle growth or strength.
Treatment
Once diagnosed, each patient undergoes a personalized treatment. On some rare occasions, a patient may not even need treatment as the body self-heals. On other occasions, chemotherapy or radiotherapy is suggested depending on the level of infliction. The treatment is planned after a series of detailed medical examinations is conducted. While in therapy, patients are monitored by their medical team which determines alterations in the level of infliction and overall progress.
The goal is to use the least amount of treatment possible in order to control the illness and allow the body the ability the self-heal.
Diagnosis
The diagnosis for Histiocytic Disorders usually requires examination of the infected tissue and a biopsy.
The treatment is patient-specific and, in order to determine the right course of action, an additional number of medical examinations need to take place such as: blood sample analysis, chest area x-ray, bone x-ray, liver biopsy, CAT scan and bonne marrow scan.
Histiocytic Disorders
Each of the Histiocytic Disorders differs having unique symptoms, medical diagnoses and treatments. The Disorders have been classified and categorized by the Histiocytosis Association – a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of Histiocytic Disorders.
The Histiocytosis Association has described them in detail and has graciously given us permission to use their fact sheets below.
Patient Rights in Greece
The Greek government – having established in parliament the Social Welfare State (article 25 of the Greek constitution) – makes efforts to ameliorate the quality of life of people with disabilities.
Since Histiocytic Disorders may cause various forms of disabilities, we would like to divert patients to the official website of the National Confederation of People with Disabilities https://www.esamea.gr and the Citizen’s Guide website http://www.odigostoupoliti.eu/category/odigos-tou-politi/amea-atoma-me-anapiria/
Scientific news
Each day is a day closer to finding a cure. Doctors, scientists and researchers all over the world work around the clock to better understand the Hystiocytic Disorders. The Artemis Association is actively involved in this global effort and can provide patients and doctors with information about the disease.
Moreover, the foundation works closely with the Nikolas Symposium, an international think tank dedicated to shed light on and spread awareness of these disorders by engaging more frequently with patients, promoting a thorough understanding of the condition, and ultimately aspiring to finding a cure.
Feel free to get in touch with us, should you have any questions. Contact
You can find more information on scientific discoveries made during the symposia here:
Nikolas Symposium
