Ehlers-Danlos Syndrome and Pregnancy: What are the Risks?

In a story from Medical Xpress, the authors of a recent study declared that maternity care for pregnant women with Ehlers-Danlos syndrome (EDS) is in dire need of improvement. Ehlers-Danlos syndrome is a group of disorders that primarily impact the connective tissues and this has the potential to increase a woman’s risk of certain complications during pregnancy. Many patients may see their symptoms worsen during pregnancy, but unfortunately there are no universal guidelines that physicians use for these patients. These patients are at greater risk for problems such as poor healing, premature or rapid labor, heart issues, tears and excess bleeding during delivery, and problems with anesthesia.

About Ehlers-Danlos Syndrome

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, aoritic 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.

EDS and Pregnancy

Beyond many of the potential health challenges and other discomforts that can appear during a typical pregnancy, Ehlers-Danlos syndrome patients face a greater risk of certain complications that are otherwise less commonly seen. To learn more, check out the list below.

  • Some patients report experiencing tinnitus (often reported as a constant ringing or buzzing sound in the ear even though no source of sound is present) which may be the result of decreased stability of the middle ear bones. This can become exacerbated during a pregnancy. A white noise generator at night can help with sleep.
  • Ehlers-Danlos patients are at a greater risk of sleep problems and other symptoms of pregnancy like palpitations, pain, and tinnitus can worsen this issue. Keeping a strict bedtime, a cool sleeping environment, and good management of pain can improve your chances of getting a good sleep.
  • Patients that deal with chronic pain often say that such symptoms first appeared during a pregnancy. The vulnerability of patients’ joints should also be a concern during pregnancy. While gaining weight is typical during a pregnancy, patients should avoid gaining too much weight so that the joints are not put under excess strain.
  • Musculoskeletal problems include pelvic girdle pain, which occurs in about 7 percent of pregnancies generally but can affect as many as 26 percent of pregnant Ehlers-Danlos syndrome patients. This may also be accompanied by back pain. Consult a physical therapist to learn about how to avoid this problem as pain can be debilitating. Sit with your legs parallel and hip width apart and avoid standing on one leg while dressing. Avoiding any heavy lifting and maintaining an exercise routine can help minimize the risk.
  • The elasticity of patients’ skin means that breast growth (which is another normal part of pregnancy) may be greater than normal. Therefore, a properly fitted bra with extra support is a good idea.
  • Lignocaine, which is commonly used in epidurals, can trigger a poor response in many Ehlers-Danlos patients. Tell your doctors if you do not get relief from lignocaine.
  • Anesthetics can cause patients to experience a major drop in blood pressure, so make sure doctors know you are a patient if you need anesthesia for any reason.
  • Patients are more likely to have babies in an atypical position. Often, patients can birth these babies when other mothers cannot.

These are just some of the considerations that these patients should take note of. Ehlers-Danlos syndrome patients should take special care to do extra research before deciding if the risks during pregnancy are worthwhile.

To learn more about Ehlers-Danlos syndrome and pregnancy, click here.


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