Rare disease is defined as occurring in <1% of the population.
My granddaughter was already rare with her gene loss. Within the past few months she has been diagnosed with a hereditary disease - von Willebrand disease. It’s a bleeding disorder which I am sure she inherited from me and my dad. It’s in ~1% of the population. Her case was discovered after a school referral to CPS led to a bruise survey. I went to the survey and told the medical staff free bleeding and bruising ran in the family, etc.
https://scrippsnews.com/stories/nearly-30-million-americans-are-impacted-by-a-rare-disease/
It has been a while since I heard the term free bleeders. We have this in our family. All three of my brothers have it to varying degrees. It did not pass on to their children, but I think it skipped a generation and my grandmothers brothers had it.
Are they diagnosed as having von Willebrand?
From what I understand, the bleeding can vary by site of injury, etc. AND estrogen increases the body’s level of vWF (Von Willebrand factor). I bleed less after puberty.
My oncologist/hematologist didn’t test me. He said we’d wait until my granddaughter had a diagnosis. He also cited my lack of excess bleeding during my lumpectomy. I will pursue this.