The Quincy community is helping to organize a bone marrow registry drive for a local teen who was recently diagnosed with hemophagocytic lymphohistiocytosis (HLH), according to an article in The Patriot Ledger. 18-year-old Priscilla Bonica was diagnosed with the rare disease around the same time that she graduated from high school. It has changed her life completely, leaving her lethargic and unlike herself. Now, she needs a bone marrow transplant.
Priscilla’s Story
Priscilla was officially diagnosed with HLH about a month ago. Beforehand, she had plenty of energy to get her through a full day of school and sports. This has all changed; she now says that “It doesn’t feel like me anymore.”
It started when she complained to her parents about head pain, something that immediately worried them. They became even more concerned when the pain wouldn’t go away. This led Priscilla to Boston Children’s Hospital, where she spent a total of three weeks undergoing testing. Eventually, the doctors were able to tell the Bonicas that their daughter had a rare form of HLH. They also told her that a bone marrow transplant would be her best treatment option.
After learning about her diagnosis, Priscilla’s mother, Erin, reached out to the nonprofit Be The Match. This organization helps to register bone marrow donors and match them to donees. Fortunately, Be The Match rallied around the family, as did the rest of their community. Together, they organized a bone marrow registry drive for Saturday, June 18th. You can join them from 11 AM until 3 PM at Quincy High School.
The family is very hopeful that they will be able to find a match for Priscilla soon, especially after the drive. They also want to thank the community for rallying around them, as many have made an effort to help out. You can read more about the event and Priscilla’s story here.
About HLH
Hemophagocytic lymphohistiocytosis (HLH) is a rare condition in which the body produces an excess of lymphocytes and cytokines. This overactive immune system leads to the characteristic symptoms of the disorder, which include:
- Fever
- Skin rash
- Increased risk of cancer
- Difficulty breathing
- Abnormal kidney function
- Heart problems
- Abnormal bleeding
- Enlarged liver, spleen, or lymph nodes
- Easy bruising
These symptoms can be the result of primary HLH or secondary HLH, which occurs as the result of another cause like a vaccine, underlying condition, or infection. Primary HLH can be caused by an inherited genetic mutation, or it can be the result of medications that suppress the immune system, certain cancers, metabolic conditions, autoimmune diseases, or immunodeficiency. In terms of treatment, doctors will tailor a treatment plan based on the type of HLH one has, along with the present symptoms and their severity. If it is caused by an underlying, identified reason, treatment aims to address that. Otherwise, doctors may recommend a bone marrow transplant, antiviral drugs, or antibiotics.
