For years, my husband and I fought for our girls, chasing down answers and all too often getting the runaround, a guilt trip, or a brush off because their symptoms simply didn’t fit into any known puzzle.
PKAN is an autosomal recessive genetic disorder that affects an estimated 1-3 out of every one million children. It is progressive and it is fatal. To this day, my husband and I have no evidence of anyone in our families ever having a child with PKAN. That means that for generations our families unknowingly passed down one wonky gene that did nothing. Then my one wonky gene met his one wonky gene and PKAN happened. While we didn’t even know those genes existed before we had children, we know now that we had a 25% chance of having a child with both genes that would have the disorder. We had two.
WorldLymphedemaDay please share awareness thank you I have this and support us appreciated
WorldLymphedemaDay please share awareness thank you help us pass this Act
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