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Bringing Together Families Affected by Histiocytosis

histiocytosis society canada
histiocytosis society canada

Histiocytosis Association of Canada aims to helps Canadians affected by this group of life-threatening blood disorders

In 2015, when Stephanie and Brett L.’s infant son fell ill with a fever, they had no idea how their family’s life was about to change. Within hours, his condition deteriorated, and he was transported to Sick Kids hospital, where they learned he had Hemophagocytic Lymphohistiocytosis (HLH), a rare blood disorder that would be fatal if left untreated. He would need a bone marrow transplant in order to survive.

“We were blindsided and devastated,” said Stephanie. “We never imaged something like this would happen to us.”

Over the next three years, their son received chemotherapy, blood transfusions, and ultimately underwent not one but two bone marrow transplants – the first transplant used bone marrow from an unknown adult donor, and sadly resulted in graft failure. The second was from an anonymous cord blood donation, and to date, has been successful. However, in both cases, the donor cells were not a perfect match for their son, and the potential risks to his health were significant.  “At the time, we were petrified. We knew the stakes were high, but we had no choice but to go with what was available to us. We made the best decision we could at the time, but the need for more donors is critical.”

This family is not alone in their experiences. HLH is part of a group of diseases called histiocytic disorders – a group of blood disorders that are characterized by an overproduction of white blood cells known as histiocytes. Common forms of histiocytic disorders include HLH and Langerhans Cell Histiocytosis (LCH), among others. Each condition is rare and varies widely in how they are treated but they all have one thing in common – they can be life changing to the patient and their family.

In the midst of their son’s treatment, Stephanie began to volunteer with the Histiocytosis Association of Canada (HAC), a Canadian non-profit charity that aims to help Canadians living with histiocytosis disorders. HAC are able to help Canadians cope with a new diagnosis, access a doctor with expertise and understanding of these conditions, or connect patients and families who are grappling with any histiocytic disorder. The organization also works to raise funds to support research so that these disorders are better understood and treated.

Stephanie adds: “We are thankful every day that passes that our son is healthy and with us, and we are grateful for his donors. They saved his life.”

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