Being diagnosed with one of many very rare blood diseases can be scary and confusing. So much information is put into terms that is difficult to understand, which can leave you feeling lost and alone. But there are web sites that can help you to better understand your condition, and many that offer positive support through the process of treatment and recovery. One such site is mskcc dot org is one such site. Sloan-Kettering was developed to help cancer patients, but also offers valuable information for a variety of very rare blood diseases.
The site describes some rare forms of leukemias that many probably have never heard of. One such disease is Hairy Cell Leukemia, which attacks the cells that help create antibodies to fight infections. Signs of this disease include, abdominal pain, a low blood count, and the possibility of very rare infections, since the immune system is weakened so dramatically. Another rare form of blood cancer the site describes is Myleofibrosis, in which too much scar tissue is formed within the bone marrow. The presence of the tissue causes the red blood cells that pass through to be broken down.
In addition to these very rare blood diseases, information is also offered on eosinophilia, where a high number of eosinophils, which are a form of white blood cells, are present in the blood. Eosinophilia is not particularly a disease, but more a reaction to one. The body creates these extra cells to fight off an allergen, infection, or intrusive parasite, perhaps. When diagnosed with this condition, the underlying cause will be looked into next, to prevent a further complication from the actual disease that may not have shown signs yet.
Another one of the rare blood diseases that was described by Sloan-Kettering was paroxysmal nocturnal hemoglobinia. This disease starts with the mutation of stem cells in the bone marrow, which then causes red blood cells to break down as they pass through. In addition to this, platelets are not developed at a normal rate. This disease is treated in the same manner as aplastic anemia, but with a more aggressive approach. The disease can also be cured with a bone marrow transplant, which may be risky or appropriate, depending on the age and overall health of the patient.
Other very rare blood diseases include different types of hereditary anemias, idiopathic edema , congenital heart block, hereditary lymph