Asthma Treatment for HED

We’ve heard from families affected by several different types of ectodermal dysplasias who’ve experienced respiratory issues along with the more standard symptoms. Are there respiratory problems in ectodermal dysplasias? What could be causing these symptoms?

While there is little published information that addresses respiratory problems in ectodermal dysplasias, there is evidence to suggest an increased risk.

Dr. Tim Fete
Dr. Timothy Fete

In our latest library article entitled “Causes and Recommendations for Respiratory Issues in Ectodermal Dysplasias”, Timothy J. Fete, M.D., M.P.H. answers frequently asked questions, covers the potential causes and offers treatment and prevention recommendations for respiratory problems in ectodermal dysplasias.

“The answer is that many of the ectodermal dysplasia syndromes are associated with an increased risk for respiratory difficulties, and that there are several potential causes.”

Timothy J. Fete, M.D., M.P.H.
Read the Article

Respiratory Problems in Ectodermal Dysplasias

Your respiratory system is more than your lungs. It includes all of your body’s organs involved in the act of inhaling and exhaling, many of which can be affected by ectodermal dysplasias. According to Dr. Fete, ear, nose and throat issues, in particular, are common symptoms of ectodermal dysplasias, and many of their functions include or affect the respiratory system.

  • Dry mouth
  • Hoarseness
  • Nasal crusting
  • Nosebleeds
  • Hearing loss
  • Middle ear infections
Alex Carroll

These symptoms are especially common within those affected by ankyloblepharon-ectodermal defects-cleft lip/palate syndrome (AEC) and ectrodactyly-ectodermal dysplasia-clefting syndrome (EEC), though they also appear within other syndromes.

Many affected by hypohidrotic ectodermal dysplasia (HED) also report having asthma, recurring upper respiratory infections throughout childhood, and specific allergies to foods or drugs.

“We are unsure if Alex’s respiratory issues are related to ectodermal dysplasia. What we have noticed with Alex is that every small cold or stuffy nose leads to breathing treatments. Many kids can get over a cold with no lasting effects, but Alex will have asthma flares each time and sometimes sinus infections. Because there is a lot we don’t know, we just stay vigilant and ensure he starts his nebulizers as soon as he shows signs of illness to ward off further breathing issues.”

Julie Carroll, Ohio

Potential Causes

While the root cause is unknown, past research has shed light on several possible causes for these recurrent and chronic respiratory issues. Some theorize that symptoms could result from the reduced numbers and abnormal function of mucous glands that moisten the nose, larynx, trachea, and lungs. Other respiratory problems in ectodermal dysplasias may stem from cleft palates, an abnormal immune system, or even certain skin symptoms.

Prevention and Treatment Recommendations

No matter what the cause may be, Dr. Fete has some prevention and treatment recommendations to share with those affected or at an increased risk of respiratory problems.

  • Avoid cigarette smoke and other environmental respiratory irritants
  • Stay up to date on routine immunizations, like influenza, as well as special immunizations, like COVID-19 vaccines
  • Use nasal saline washes routinely
  • Aggressively treat any respiratory infections
  • Consider getting evaluated for asthma, allergic rhinoconjunctivitis or immune deficiency
  • Follow your hearing status closely, working with an audiologist and speech pathologist as needed

Not everyone who is affected by ectodermal dysplasias experiences respiratory-related symptoms, but they are fairly common across our community. Discussing the risks with your doctor and following prevention and treatment recommendations can help you to manage any potential complications.

Have you or a loved one experienced respiratory problems in ectodermal dysplasias? We’d love to hear about your experience and any treatment or prevention techniques that have worked for you in the comments below.

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