The Histiocytosis Association Research Program operates on an annual cycle. During the 1st Quarter of each year, the Association begins with an official announcement that the process is open, inviting Physicians and Scientists.
The announcement is directed to Healthcare Professionals worldwide via the Association's website and through email and mail campaigns.
Help Share ... for information on the Official Grant Application and Submisison Process please visit The Road to a Cure-Research Initiatives
LCH in Adults is a Rare Disorder
LCH occurs when the body produces too many Langerhans cells (histiocytes), which are a type of white blood cell that helps fight infection.
While Langerhans cells are found in normal, healthy people, there is an over-production and build-up of these cells which can lead to organ damage in adults with LCH.
Although some forms of this disease were first described over a century ago, it has only been in recent years that LCH has received more attention, especially in adults.
The name for this disease has evolved over the years, as new information has been discovered. Previously known as Hashimoto-Pritzker syndrome, Letterer-Siwe disease, Hand-Schuller-Christian disease, eosinophilic granuloma and histiocytosis X, the name "Langerhans cell histiocytosis" was later introduced. This name was agreed upon to recognize the central role of the Langerhans cell.
To date, no large-scale studies have been done on how often LCH occurs in adults. It is estimated that it occurs in 1-2 adults per million people. It is important to remember that there are still many undiagnosed/misdiagnosed patients. The length of time from presenting symptoms to diagnosis can be years, which emphasizes the importance of finding a physician who is knowledgeable about this disease.
Information has been collected in various studies, including the 2001 International Histioicyte Society Registry on 274 adults from 13 countries.
In this study, it was reported that 31% of patients had disease in a single system, 68% had more than one system involved , and 30% diabetes insipidus.
According to another registry based in Germany, it is estimated that 46% of adult patients had bone lesions, 17% skin, 7% pituitary, 4% liver/spleen, 2% brain, and 2% GI tract.
It is estimated that 63% of adults with LCH have lung-only disease, pulmonary Langerhans cell histiocytosis (PLCH), although it can also occur with other involvement, such as bone, skin or diabetes insipidus.
LCH can be systemic, and most often an Oncologist/Hematologist takes the main role in treating patients. However, since LCH can affect so many areas of the body, sometimes a team approach may be appropriate, and the Oncologist may enlist the help of various types of specialists such as Surgeons, Pulmonologists (lung), Dermatologists (skin), Dentists or Endocrinologists (diabetes/hormones) to give their input.
The patient's chances for survival and maintaining good quality of life depend on the individual case, but research has suggested that the course is less favorable for elderly patients, those with multiple locations of disease and those who may have risk-organ (lungs, liver, spleen, bone marrow) involvement. Limited involvement can also become serious, depending on the particular sites involved, how quickly the disease continues to progress and the patient's response to treatment.
Overall, physicians will be able to discuss each patients likelihood of responding and doing well, but it is often difficult for doctors to make definite predictions since LCH has clearly shown itself to be an unpredictable disease.
The cause of LCH is unknown, and scientists do not agree on whether LCH is a type of cancer or whether it could be a condition triggered by an inflammatory process. Genetic predisposing factors are currently being explored. However, to date, the true cause of LCH remains a mystery.
Resource: www.histio.org
While Langerhans cells are found in normal, healthy people, there is an over-production and build-up of these cells which can lead to organ damage in adults with LCH.
Although some forms of this disease were first described over a century ago, it has only been in recent years that LCH has received more attention, especially in adults.
The name for this disease has evolved over the years, as new information has been discovered. Previously known as Hashimoto-Pritzker syndrome, Letterer-Siwe disease, Hand-Schuller-Christian disease, eosinophilic granuloma and histiocytosis X, the name "Langerhans cell histiocytosis" was later introduced. This name was agreed upon to recognize the central role of the Langerhans cell.
To date, no large-scale studies have been done on how often LCH occurs in adults. It is estimated that it occurs in 1-2 adults per million people. It is important to remember that there are still many undiagnosed/misdiagnosed patients. The length of time from presenting symptoms to diagnosis can be years, which emphasizes the importance of finding a physician who is knowledgeable about this disease.
Information has been collected in various studies, including the 2001 International Histioicyte Society Registry on 274 adults from 13 countries.
In this study, it was reported that 31% of patients had disease in a single system, 68% had more than one system involved , and 30% diabetes insipidus.
According to another registry based in Germany, it is estimated that 46% of adult patients had bone lesions, 17% skin, 7% pituitary, 4% liver/spleen, 2% brain, and 2% GI tract.
It is estimated that 63% of adults with LCH have lung-only disease, pulmonary Langerhans cell histiocytosis (PLCH), although it can also occur with other involvement, such as bone, skin or diabetes insipidus.
LCH can be systemic, and most often an Oncologist/Hematologist takes the main role in treating patients. However, since LCH can affect so many areas of the body, sometimes a team approach may be appropriate, and the Oncologist may enlist the help of various types of specialists such as Surgeons, Pulmonologists (lung), Dermatologists (skin), Dentists or Endocrinologists (diabetes/hormones) to give their input.
The patient's chances for survival and maintaining good quality of life depend on the individual case, but research has suggested that the course is less favorable for elderly patients, those with multiple locations of disease and those who may have risk-organ (lungs, liver, spleen, bone marrow) involvement. Limited involvement can also become serious, depending on the particular sites involved, how quickly the disease continues to progress and the patient's response to treatment.
Overall, physicians will be able to discuss each patients likelihood of responding and doing well, but it is often difficult for doctors to make definite predictions since LCH has clearly shown itself to be an unpredictable disease.
The cause of LCH is unknown, and scientists do not agree on whether LCH is a type of cancer or whether it could be a condition triggered by an inflammatory process. Genetic predisposing factors are currently being explored. However, to date, the true cause of LCH remains a mystery.
Resource: www.histio.org
Looking for Volunteers...
If you have an interest in event planning, public relation activities, or simply an energetic person and looking for a project to get involved in...please email me.
As 2013 approaches, your energy, talents, and expertise would be greatly appreciated. The efforts of finding a cure takes a community of people. Be one of those people that can help make a difference.
Email me
As 2013 approaches, your energy, talents, and expertise would be greatly appreciated. The efforts of finding a cure takes a community of people. Be one of those people that can help make a difference.
Email me
Getting Ready for 2013...
As the new year approaches, I hope to "Kick Off" My Campaign for LCH.
Currently, there are several opportunities for raising awareness and funds. In order to make this happen, I am making a plea for help.
I am in need of volunteers to steer a committee and to participate with me on a range of fun and exciting ideas.
Please contact me at My Email
Currently, there are several opportunities for raising awareness and funds. In order to make this happen, I am making a plea for help.
I am in need of volunteers to steer a committee and to participate with me on a range of fun and exciting ideas.
Please contact me at My Email
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