Hailey Bieber Revealed She Has a Genetic Condition Called Ectrodactyly—But What Is That?
Bieber took to Instagram to ask people to stop "roasting" her "crooked" pinky, as it's apparently caused by ectrodactyly.
Internet trolls will find any way they can to criticize celebrities' bodies—it's one of the most toxic parts of social media. Hailey Bieber, who's previously been open about how social media affects her mental health, recently asked Instagram trolls to stop "roasting" a part of her appearance you probably wouldn't expect to be scrutinized in the first place: her pinkies.
"Ok let's get into the pinky conversation.. because I've made fun of myself about this for forever so I might as well just tell everyone else why [my pinkies are] so crooked and scary," Bieber wrote in an Instagram Story that featured a photo of her pinky looking, admittedly, a little crooked.
The model then reportedly shared a now-deleted screenshot of a Wikipedia page for a condition called ectrodactyly, according to the Daily Mail. "I have this thing called ectrodactyly and it causes my pinky fingers to look the way they do," Bieber reportedly wrote alongside the Wikipedia screenshot, per the UK news outlet. "It's genetic, I've had it my whole life. So people can stop asking me 'wtf is wrong with her pinky fingers.'" (Related: These Social Media Features Make It Easier to Defend Against Hateful Comments and Encourage Kindness)
What is ectrodactyly?
Ectrodactyly is a form of split hand/split foot malformation (SHFM), a genetic disorder "characterized by the complete or partial absence of some fingers or toes, often combined with clefts in the hands or feet," according to the National Organization for Rare Disorders (NORD). The condition can give hands and feet a "claw-like" appearance, and in some cases, it can cause the appearance of webbing between fingers or toes (known as syndactyly), per the NORD.
Though SHFM can present in several different ways, there are two main forms. The first is called the "lobster claw" variety, in which there's "usually an absence" of the middle finger; a "cone-shaped cleft" in the finger's place essentially divides the hand into two parts (making the hand look claw-like hence the name), according to the NORD. This form of SHFM usually happens in both hands, and it can also affect the feet, per the organization. Monodactyly, the other main form of SHFM, refers to the absence of all fingers except the pinky, according to the NORD.
It's unclear exactly what type of SHFM Bieber claims to have—clearly she has all 10 fingers on her hands—but as the NORD notes, there are several different "types and combinations of deformities" that can happen with SHFM, and the conditions "range widely in severity." (Related: This Model with a Genetic Disorder Is Breaking Down Stereotypes)
What causes ectrodactyly?
As Bieber reportedly said in her Instagram Stories, ectrodactyly is a genetic condition, meaning those who have it are born with it (either due to genetic makeup or a random gene mutation), according to the Genetic and Rare Diseases Information Center (GARD). SHFM, in general, can affect male and female babies equally. Roughly one out of every 18,000 newborns are born with some form of the condition, per the NORD. While SHFM can impact members of the same family, the condition may present differently in each person. It's diagnosed based on "physical features present at birth" and skeletal anomalies detected by X-ray scans, notes the NORD.
For the most part, people with a form of SHFM generally live a normal life, though some may have "difficulties in physical functioning," depending on how severe their malformation is, according to the NORD. There are also "very few cases of SHFM" that are sometimes accompanied by deafness, according to a 2015 study published in the CHRISMED Journal of Health and Research.
Aside from Bieber, there aren't many public figures who have some form of SHFM (or at least not many who've been open about having the condition). News anchor and talk show host, Bree Walker eventually went public with her syndactyly diagnosis (characterized by two or more webbed or conjoined fingers) after years of hiding her hands inside a pair of gloves. Back in the '80s, Walker told People she was often subjected to cruel treatment like staring and unsolicited commentary from strangers about the way her hands and feet look. Walker has since gone on to become a disability-rights activist for those with similar conditions. (Related: Jameela Jamil Just Revealed She Has Ehlers-Danlos Syndrome)
For Bieber's part, she hasn't elaborated on how, exactly, ectrodactyly has impacted her life, nor has she mentioned whether she has other malformations besides the appearance of her pinky finger.
That said, it's always worth remembering that commenting on someone else's body is never cool—full stop.