Abortion Access can be Life-Saving for Ehlers-Danlos Syndrome Patients

According to a story from Undark, Renee Schmidt’s first signs of Ehlers-Danlos syndrome became really noticeable when she was a freshman in college. She would experience brief bouts of memory loss or sudden loss of consciousness when she turned her head. The episodes began to increase in frequency. Eventually, they got bad enough that Renee had to drop out of college. It took three years for her to be successfully diagnosed.

About Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome is a group of disorders that affect connective tissue. There are several different types which have varied symptoms and are linked to different genetic mutations. These mutations may be inherited or may appear early in a patient’s development. Symptoms can include loose joints, stretchy skin, scarring, pain, aortic dissection, scoliosis, and osteoarthritis. Vascular Ehlers-Danlos syndrome is linked to mutations of the COL3A1 gene and is characterized by fragile, transparent skin, thin hair, short stature, fragile organs prone to rupture, distinct facial features, club foot, and joint hypermobility. With no cure currently available, the treatment of these syndromes is supportive and based on symptoms as they appear. Surgery may be utilized to aid joint problems, but results are varied. There is a great disparity in the severity of symptoms; some patients are able to lead fairly normal lives, whereas others may be severely affected. Vascular Ehlers-Danlos syndrome has a median life expectancy of just 48 years. To learn more about Ehlers-Danlos syndrome, click here.

Reproductive Health and EDS

The overturning of the Roe v. Wade precedent by the Supreme Court over the summer was bad news for women’s health, but it was especially troubling for patients like Renee. Ehlers-Danlos syndrome is just one of several rare diseases that can make pregnancy more complicated and dangerous. The inability to receive an abortion increases the risk of complications and even death.

Lack of awareness about the disease can further complicate the issue, but researchers are working with the nonprofit Ehlers-Danlos Society to establish care guidelines surrounding pregnancy in people with the disorder. The appearance of complications during pregnancy, such as pain, weeks of contractions, and an increased risk of miscarriage or stillbirth are valid reasons for patients to decide to get an abortion.

Pregnant Ehlers-Danlos syndrome patients need access to a multidisciplinary care team, a factor that researchers already plan to include in their guidelines. Birth can be faster and non-dissolving stitches may be needed because wounds may remain unhealed after dissolving stitches have disappeared.

Renee eventually got surgery for her hypermobility; the brief memory lapses and fainting spells were due to her spinal vertebrae compressing the brainstem when she moved her head. She notes that if she had gotten pregnant in a state that bans abortion before having the operation, delivering a child could have potentially meant death. While some bans do have exceptions, they are often vague and difficult to navigate. Historically, physicians have been hesitant to risk being perceived as breaking the law.

It’s also possible to travel to a different state to seek an abortion, but some states have created provisions that allow a citizen of the state to sue someone that has helped another person get an abortion.

Nevertheless, the guidelines in development for patients should allow patients to feel more empowered and will also help medical professionals understand how to manage Ehlers-Danlos syndrome during pregnancy more safely and effectively.

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