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learn about histiocytosis
Histiocytosis is a group of 'rare' diseases that affect the immune system. If untreated, they are fatal. LCH, HLH, JXG, ECD, DI and RD are the acronyms used for these diseases that were once too 'rare' for a name, so they were coined by the process by which they affected the body. They occur when a white cell known as a histiocyte over produces too many of these. This can cause organ disfunction/failure and tumor growths.
For a list of organizations with additional information and resources for HLH check out the HLH Resources tab above.
To learn more about these diseases in detail visit:
The power of knowledge is key - KEY in raising awareness!
Education is important in all aspects of life. Wether you are learning how to tie your shoe, ride a bike, get a degree or learn a new hobby - knowing the Who? What ? When? Where? Why? How? How many? applies.
Who does HLH & Histiocytosis affect? It can affect EVERYONE! Young & Old - It can even be detected in utero & treated, but know this is very unique.
What causes is to happen? Some cases are gentic. Others are known as secondary cases and these can be caused by bacterial infections, viruses, malignancies or cancers and other autoimmune diseases.
When does HLH or Other forms of Histiocyosis occur? HLH can occur at ANY age and ANY time throughout life. The majority of genetic forms expose themselves shorty after birth or during adolesence. With increasing awareness more adults with primary or genetic forms of HLH have been diagnosed in recent years. Secondary forms of HLH can occur at any age. It is believed there is a 'trigger' point or factor that causes the HLH to activate, but with limited research it has not yet been discovered.
Where does it affect your body? Each disease can affect everyone differently. HLH is commonly known to affect the liver, spleen, cell counts and even bone marrow. many patients have severe lung complications with pleurisy that is often mistaken for a 'case of pnumonia' diagnosis at first glance. Sepsis diagnoses are also common in these events of severe organ complications. View the HLH Factsheet from the Histiocytosis Association here. We reccommend you visit www.Histio.org to learn more about each disease with their easy to view and print fact sheets!
Why is Histiocytosis so rare? A large-scale studen in sweden suggested 1 in 1.2 million cases occured each year. Updated reports are now suggestiong this number has evolved to 1 in every 50,000 births! This is a seemingly significant change. This is largely due to awareness and persisting patients and their families pushing for more information. Leading physicians are now being quoted as saying HLH is 'rarely diagnosed'. Advancements in the digital world with websites and social media have played an exceptiona
How will I or my loved one be affected by Histiocytosis? Histiocytosis is a disease that is based on differential diagnosis. There is no single specific test. Sometimes macrophages can be found in lab tests like a bone marrow biopsy. It can be difficult to understand why this is happening or why you may hear varying statistical outcomes on treatment and short and long term survival and life changes. Typical treatments often include sterroids, chemotherapy and the possiblity of a stem cell or bone marrow transplant. The patient and their family & friends may have extremely similar feelings, needs and discomforts that a cancer patient may have. Many patients/family/friends often have feelings of anger towards the lack of others understanding how serious this disease is. A common comparison we say is "HLH is similar to Leukemia"
>> One doctor explained to us that HLH has multiple individual 'bad' cells created around the same time, whereas, cancers are a bad cell that multiplies more bad cells. This is how HLH can spread so quickly - depleting red cells, platelets and other rapidly dividing cells abilities to 'turn off' the immune system.
We, the Majusiak Family, understand on a firsthand basis of perspectives from the patient (male), the wife, the parents of an adult, family, friends and workplace situations. You do NOT have to be alone.
For more information from others experiences please visit our Resources page for links to organizations and online support groups.
How can I ? Help. Help is what people ask the most. What can I do? they commonly say. For some of us it's not easy giving up our routines, but the Journey with HLH isn't often a short one for patients, particularly survivors. The easiest thing for us in the beginning was to let people cook meals. We often asked for them to be in tinfoil and frozen so we could just throw them in the oven and discard the trash when we were done. paper products too puhlease! Eric's parents and myself (amanda, Eric's wife) often spent 10-12 hour days at the hospital. The first few weeks weren't so bad, but as time went on we became numb to this new daily routine and it was so much easier when we didn't have to focus on cleaning or extra dog walks at 1am if someone else came over while we were at the hospital.
Having help now (1 1/4 years later) varies more towards big projects. Due to Eric's weakened lungs still healing he is restricted to how many pounds he can lift or certain ways he can and can't move due to neuropathy and his second disease Still's Disease. We were always the 'helpers' berfor and sometimes we have to be the 'helpees' now and we understand that can be very difficult. Please don't hesitate to Contact us or ask oneone in the support groups for ideas on saving time, dealing with the surmounting medical bills or just learning to relax again...
How many ? How many more have to suffer? How many have to be misdiagnosed? How many days must we spend trying to take one small step?
How many SHAREs can we get to help make a difference in someone's life that is affected by HLH or another type of Histiocytosis?
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Histiocytosis Awareness Month