promote awareness and research funds for this rare-lifethreatning auto-immune disease
MY DAUGHTER'S STORY:
About her disease: HLH (Hemophagocytic Lymphohistiocytosis) is a rare, serious condition. It is caused by some of your white cells in your body becoming overactive. The cause is either inherited or started by an infection, which activated the immune system. In the inherited disease, both parents are carriers of the disease (but not sick themselves) and only one of four children gets sick. Rarely is the disease previously known in the family.
It may be difficult and often impossible to tell whether the disease is inherited or not, unless a specific genetic abnormality known the cause the disease is found. The sickness may in any case be started by infection. Without treatment, patients with HLH usually die within the first two months after diagnosis.**Kena has started treatment which will be explained.
Her current treatment plan: Makena is being treated according the a treatment program designed by physicians working together in the International Histiocyte Society. The treatment consists of a combination of medicines. If the disease does not go away, returns, or is found to be genetic a bone marrow transplant will be necessary.
The main medicines being used are Dexamethasone, VP-16, and cyclosporine A. If after another spinal tap is performed and HLH are found Methotrexate will also be used.
She will receive Dexamethasone and cyclosporine A everyday for the first 8 wks. VP-16 twice a week for 2 weeks then once a week for 8 weeks. We must take it one day at a time. Look for daily updates for more info.
1. National Bone Marrow Registry is essential.
2. Help fund research through the Histiocytosis Assosiation of America.
3. No child should die from this disease!!!