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How do I know if I have Langerhans Cell Histiocytosis?

What signs or symptoms may make you suspect you may have Langerhans Cell Histiocytosis. People who have experience in Langerhans Cell Histiocytosis offer advice of what things may make you suspicious and which doctor you should go to to receive treatment

Do I have Langerhans Cell Histiocytosis?

Langerhans Cell Histiocytosis (LCH) is a rare disorder characterized by the abnormal accumulation and proliferation of Langerhans cells, a type of white blood cell, in various tissues and organs of the body. It can affect people of all ages, but it is most commonly diagnosed in children.



Symptoms:


The symptoms of LCH can vary depending on the organs involved. Common symptoms may include:



  • Skin rash: LCH can cause a persistent rash that may be scaly, red, or itchy.

  • Bone pain: LCH can affect the bones, leading to pain, swelling, or fractures.

  • Swollen lymph nodes: Enlarged lymph nodes may be present, especially in the neck, armpits, or groin.

  • Respiratory symptoms: If LCH affects the lungs, it can cause cough, shortness of breath, or recurrent infections.

  • Abdominal symptoms: Involvement of the liver, spleen, or digestive system may result in abdominal pain, poor appetite, or weight loss.

  • Endocrine symptoms: LCH can affect hormone-producing glands, leading to symptoms such as excessive thirst, frequent urination, or delayed puberty.



Diagnosis:


If you suspect you may have LCH, it is important to consult a healthcare professional. The diagnosis of LCH typically involves:



  • Medical history and physical examination: Your doctor will ask about your symptoms, medical history, and perform a thorough physical examination.

  • Imaging tests: X-rays, CT scans, or MRIs may be ordered to assess the extent of organ involvement and identify any bone lesions.

  • Biopsy: A small sample of affected tissue, such as skin, bone, or lymph node, may be taken for examination under a microscope to confirm the presence of Langerhans cells.

  • Blood tests: Blood tests may be conducted to evaluate organ function and rule out other conditions.



Treatment:


The treatment of LCH depends on the extent and severity of the disease. It may involve:



  • Observation: Some cases of LCH may resolve on their own without treatment, especially in infants.

  • Medications: Corticosteroids, chemotherapy drugs, or targeted therapies may be prescribed to suppress the abnormal immune response and reduce inflammation.

  • Surgery: In certain cases, surgery may be required to remove lesions or repair bone damage.

  • Radiation therapy: Radiation may be used to treat localized or resistant LCH.

  • Supportive care: Additional treatments may be provided to manage specific symptoms or complications.



If you suspect you have Langerhans Cell Histiocytosis, it is crucial to seek medical attention for proper diagnosis and treatment. Only a healthcare professional can accurately diagnose LCH based on your symptoms, medical history, and appropriate tests.


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Stories of Langerhans Cell Histiocytosis

LANGERHANS CELL HISTIOCYTOSIS STORIES
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I am a mother of three very active children. My husband is in the Navy and was stationed in CT. I had a bad hip pain and went t9 the Dr. They did an MRI and found nothing. A year later we got stationed on WA and on my trip across I started having hor...
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I was diagnosed with what was then called Histiocytosis-x at the age of 2 1/2. I had it bilaterally of the mastoids and underwent chemotherapy for six months.
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i was 18 when I was diagnosed, 2 months before my 19th birthday. It shocked me when I heard the words and how they described it to me. I felt sick it felt like the world just stopped. But I started to deal with it. I've been fighting it since June 20...
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Summer started with pain in her right leg, took her to doctors, was put down to growing pains, after a cpl of weeks her left leg started sticking out at the bottom when she walked, the more she walked the more it stuck out, X-ray & scan were fine, bl...
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Langerhans Cell Histiocytosis forum

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My pulmonary doctor has seen 4 cases of this at a hospital for maybe 100,000 vets. Face book shows about 15 of us on one page... I'd like to know how many folks served especially in the early 90's Gulf war 1 taking the anthrax vaccination 

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