Maine Camp Hosts Families with Rare Diamond-Blackfan Anemia

Some of us here may have heard of Camp Sunshine — which provides retreats “combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families through the various stages of a child’s illness.”

Founded in 1984, Camp Sunshine’s program is offered year-round and is free of charge to families.

This summer, Camp Sunshine inadvertently did something special for the Diamond-Blackfan anemia patient community — and the rare disease community as a whole!

Camp Sunshine says that only about 1,000 people worldwide are diagnosed with Diamond-Blackfan Anemia — and 59 families affected by the disease are currently at the camp!

Nearly 10% of the entire population of Diamond-Blackfan Anemia patients have congregated together! This must be an incredible source of support and together for those families, who very likely never met someone else with the rare condition.

In fact, officials say 4-year-old son Noah Dowie of Australia traveled the farthest to Sebago Lake camp — in hopes of finding support from other families and getting help from clinicians and researchers.

So for Noah and others like him, being surrounded by that many patients and families affected by this very rare condition is a big big deal.

What is Diamond-Blackfan Anemia?

Diamond-Blackfan anemia is a rare genetic mutation of the bone marrow— the body’s factory for making new blood cells. Diamond-Blackfan anemia causes problems in the production of red blood cells, which are the “carriers” that transport oxygen throughout the body.

With fewer red blood cells (which is called anemia), patients are subject to a whole host of health complications. While some of these can be serious—including a higher risk of developing certain types of cancer—it is possible to manage Diamond-Blackfan anemia through a combination of treatments.  In some cases, full remission is possible.

To learn more about Diamond-Blackfan anemia, click here.

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