I am writing to you concerning a disease call Histiocytosis (Histio). There are a few types of Histio, however, they all share a common thread…being overlooked as a potential diagnosis. The label “Orphan Disease” is currently placed on Histio which leads to a lack of education at medical school and may place Histio in a category of, “I’ll probably never see this in my career,” for doctors currently practicing. My daughter was recently diagnosed with this disorder. She was only 8 at the time she was diagnosed, and she was considered one of the lucky ones.
So what is Histiocytosis? Well, it’s a blood disease in which a person’s body produces too much of the white blood cell, Histiocytes. These cells then cluster together and attack various areas of the body. Skin, bones, lungs, liver, spleen, gums, ears, eyes, and/or the central nervous system all have the potential to be effected by this disease. Currently, Histio is not considered to be a cancer but there is an ongoing debate with regard to that. Some doctors do consider it cancer, while the majority believes it to be immunological.
Generally, this disease attacks newborns, infants, toddlers and young children. It has been found in teens and adults as well. The current figures used to estimate the occurrence of Histio is “1 in 200,000 children and 1 in 560,000 adults.” However, it has been brought to my attention that these figures are European based estimates for the United States does not require for doctors to report to one central location the occurrences of LCH in their patients. Therefore, we do not know how many cases really are here in the US, yet we do not receive adequate governmental funding due to being categorized as an “Orphan Disease.” The more we speak out about Histiocytosis, the more people we find with Histiocytosis! For being such a “rare” disease, we are finding an adequate amount of people but I believe we will find even more Histio Warriors (those fighting Histio diseases) once we gain coverage.
LCH can be diagnosed through various methods including (but not limited to) biopsy, blood tests, x-rays, urine tests, CAT Scans, and MRI’s. However, a doctor cannot see what they have not been educated on so even if the test shows something “questionable” they may not make the link to Histio unless they understand Histio. Misdiagnosis is a very big problem for Histiocytosis. Because Histio can present itself on the body in various ways, it can often be misdiagnosed as eczema, constipation, Multiple Sclerosis, chronic bronchitis, lipoma, migraines, Non-Hodgkins Lymphoma, staph pneumonia and the list goes on and on.
Treatment for Histiocytosis includes (but is not limited to) surgery, steroids, various chemotherapy drugs, radiation, and bone marrow transplants depending upon the individuals needs and response to the methods chosen. While some patients do respond well to treatment many patients do need multiple treatments and still continue to deteriorate. If diagnosis takes too long, or if the patient’s body doesn’t respond well enough to the treatment the disease can, and will, claim the life of that child, teen or adult. We have lost too many lives to this disease.
The cause of Histiocytosis is unknown. We need further research to gain a better understanding of this disease so that we may help save the lives of these Histio Warriors battling this disease. The only way we will gain the necessary research is to increase our research funding; that will only happen if we raise awareness. Awareness is a necessity for two reasons: 1.) To increase our funds for research 2.) To reach other families searching for an answer for their loved one.
Will you join us in raising awareness for Histiocytosis? Will you speak of this disease to allow families to stand up for their loved one and gain a proper diagnosis to then receive the appropriate and necessary treatment to save their life? Please, one step for you will be leaps and bounds for Histiocytosis.
Thank you for your time. I hope to hear from you soon and start an informative and developing conversation. Feel free to contact me via the below methods and I’ve listed a few important Histiocytosis websites for your information.
Awareness Leads To Better Funding, Which Leads To Better Research, Which Leads To Better Treatment
And Ultimately A Cure!
Thanks so much to Lelynn Pars for allowing me to use this letter to raise awareness for Histio. Her wealth of information on the topic is awesome! Thanks!!!
Have a great day friends!
J
:)
ReplyDeleteLelynn Parys