What is HLH?
HLH is a 'rare' disease which affects the immune system which affects both children and adults. It is estimated 1 in every 200,000 will be diagnosed with a Histio disorder, however when you break out HLH by itself there are 1.2 million cases diagnosed per year. It is believed theses statistics are skewed due to the many who go undiagnosed and in fact these numbers are much larger.
A protocol was developed in 2004 which follows very similarly to the treatment of most cancers. High dose steroids and chemotherapy is the first stop followed by a potential need for a Bone Marrow Transplant.
In recent years, the rate of diagnosis has begun to climb, but we are far away from the level of awareness we need to receive government funding for research. The majority of studies have been done on private donations.
November 2018: Gamifant® (emapalumab-lzsg) is the first FDA-approved treatment specifically developed for primary hemophagocytic lymphohistiocytosis (HLH), targeting interferon gamma (IFNγ) overexpression.
Please see full Prescribing Information for Gamifant.
You may also contact Sobi at firstname.lastname@example.org or 866-773-5274.
Reference: 1. Gamifant [Prescribing Information]. Stockholm, Sweden: Biovitrum AB; 2018.
Primary vs. secondary hlh
There are two types of HLH - Primary, which is a type which can be identified with genetic testing and Secondary which has been linked to vaccines, bacterial or viral infections, Epstein-Barr. CMV, Ehrlichiosis and other cancers.
Our dream is to one day see a sea of blue like the sea of Pink Susan G. Komen has created for Breast Cancer Awareness.
Please help us by sharing this Fact Sheet the Histiocytosis Association has developed with your physician today!
Knowledge is POWER! Together we can find a CURE.