For the first 18 years of my life, myfamily historywas a complete mystery.
But despite having an idyllic childhood, I spent a lot of time imagining my birth family.
I never wondered if my birth mother experienced migraines or, if like me, she suffered fromeczema.
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All I could do was shrug my shoulders and say, I dont know.
My family health history was a blank page.
I was also still a teenager and suffering from the common delusion of reckless invincibility.
My good health was a cloak, shielding me from thinking about illness and letting me walk in denial.
For some, not knowing your history can make the future seem even more uncertain.
And that can be scary and frustrating when youor your childrendevelop health issues.
For Nanci, from Utah, this lack of information contributed to a lifetime of misdiagnoses.
Then she was diagnosed at birth withneurofibromatosis, a genetic condition where tumors form on nerve tissue.
In her case, the prognosis was bleak and she wasn’t expected to survive, she tells SELF.
Then she was adopted.
Her twin was diagnosed with epilepsy and they both developed jot down 2 diabetes later in life.
Beckys son also became ill with a blood disease, one that could have been hereditary.
She wishes that basic health reports were given to all adopted children as part of their official records.
Knowing nothing about my family medical information was scary and frustrating as a mom, she tells SELF.
When my child got sick it was like a puzzle trying to figure out our health history.
As a result, many medical problems go unreportedespecially if theyre stigmatized in any way.
“Is this information that you are prepared to know?
Also, understand the limitations [of testing].”
Even with the most comprehensive genetic testing, there is likely to be some remaining uncertainty, Schuetzle says.
Not to mention, these tests can be expensive.
(Some insurance planswill cover genetic testingif its recommended by a physician.)
Becky has also forgone genetic testing for now.
As a single mom, the financial barrier was something she considered insurmountable.
For adopted people, their family health history can be an important missing element in their health care plan.
This is my preferred adoption language, as opposed to using phrasing such as real mother.
More information can be foundhere.
