Miabelle was diagnosed with HLH in February 2011. Her symptoms had begun when she was only 11 months old and included high fevers, diarrhea, extreme lethargy, and constant crying. Her parents knew right away that something was wrong, and after visiting three different area hospitals, finally got the HLH diagnosis. Miabelle would begin her treatment for HLH on her first birthday.
After doing some research and getting recommendations from friends, Miabelle’s family decided to transfer her care to Cincinnati Children’s. This decision would take them away from their home in New Jersey for 18 months, but Miabelle’s parent knew that Cincinnati Children’s could provide a level of care found at no other hospital in the US.
Upon arrival at Cincinnati Children’s, Miabelle’s family experienced some issues with finding a stem cell donor. In response to this situation and Miabelle’s declining health, Miabelle’s doctor decided that they needed to come up with an alternative treatment solution. The solution was to use the stem cells from two different cord blood donors. Neither of these donors were a perfect match, but Miabelle’s doctor had faith that they could make it work.
Once Miabelle received her bone marrow transplant her body very slowly began to respond by producing new, healthy stem cells. Finally, in August of 2013, Miabelle and her family got to move back home. Miabelle is now an HLH survivor and her family is committed to raising awareness around this misunderstood disease with the help of organizations like the Matthew and Andrew Akin Foundation.
More About HLH
Hemophagocytic Lymphohistiocytosis or HLH is estimated to affect one in every one million children. It is a life-threatening condition that is most often caused by “primary” HLH or “familial” HLH, both of which are described as inherited immune system issues. Patients can also be diagnosed with “secondary” HLH. Secondary HLH is diagnosed when doctors believe the condition is not related to an inherited immune system condition. The key to both of these diagnoses, whether “primary” or “secondary”, is that the symptoms are quickly linked to HLH and treatment begins immediately.
That’s when the doctor-scientists and researchers at Cincinnati Children’s HLH Center of Excellence come into play. This amazing team of HLH Specialists work tirelessly to understand, treat, and raise awareness around this rare condition. These efforts are all backed with one passion, to change the outcome for children and families affected by HLH.
Treating HLH includes protocol that is designed to suppress the immune system. Most often this comes in the form of treatments like steroids and chemotherapy. Some patients also undergo a bone marrow transplant. Bone marrow transplants are an aggressive effort meant to encourage the replacement of a patient’s current immune system, and thus cure them of HLH. Each patient is different and complete treatment plans are created on a case-by-case basis.
For more information on HLH and the resources available at Cincinnati Children’s HLH Center of Excellence, please visit the HLH Center for Excellence on the web. You can also find out more about the disease HLH, symptoms, and diagnosis by watching the video below.