Ehlers-Danlos Hair Loss: What You Should Know

Ehlers-Danlos (EDS) is a group of connective tissue disorders that can affect your skin, joints, bones, blood vessels, and other organs of the body. And even though it may seem insignificant, this condition can also affect the hair on your scalp, face, and body.  

EDS has to do with abnormalities in the production of collagen in your body. And bear in mind that collagen is the most abundant protein in the body that essentially acts as a building block for your skin, bones and hair (among other connective tissues).

But problems with collagen may be one reason why this condition causes hair loss. There can be other explanations for it as well. Here, we’ll take a look at them and try to understand if something can be done about Ehlers-Danlos’ hair loss

How Does EDS Affect The Hair?

According to a study published in the Skin, Health and Disease, people with vascular EDS – a very rare condition that affects the organs and vessels carrying blood – commonly experience diffuse thinning

Diffuse thinning refers to the generalised loss of hair from a particular area of the body. For instance, you might excessively shed your scalp hair because of it.

diffuse hair loss

But it’s also possible for you to have sparse body hair and madarosis (loss of eyebrows and eyelashes) because of this condition. 

Unfortunately, though, it’s not understood how this condition causes hair loss.  

One case report of EDS hair loss published in the Indian Journal of Dermatology, Venereology and Leprology suggested that it may be due to problems in the collagen of the hair papilla (that essentially forms and grows the hair). 

And you should know that collagen contains an amino acid (a building block for protein) called proline. That is a part of the hair-making protein called keratin. 

So, any abnormalities in the collagen itself may end up affecting the growth of your hair

Curiously enough, one study published in Frontiers in Genetics found that in another rare type of Ehlers-Danlos syndrome (AEBP1-related classical-like EDS), 6 out of 11 participants had hair loss that resembled pattern baldness

The authors even considered it to be a “feature of this condition.” But again, EDS hair loss still requires a lot more and larger research. 

What Are The Other Causes Of Hair Loss In Ehlers-Danlos? 

Let’s take a closer look at some of the other potential causes of Ehlers-Danlos hair loss: 

Digestive Problems 

Ehlers-Danlos can cause a range of gastrointestinal (GI) problems. 

One review published in Neurogastroenterology & Motility reported many GI issues resulting from this syndrome. A few of them are as follows: 

  • Pain in the abdomen 
  • Nausea 
  • Constipation
  • Heartburn 
  • Irritable bowel syndrome (IBS) -like symptoms
  • Gastritis (inflamed stomach lining)
  • Hiatal hernia (which can cause pain from acid reflux)

They can also have gut motility issues, one of which is gastroparesis. In this, the stomach takes much longer than usual to empty the food contents into the small intestine.

Stomach pain (1)

And the symptoms of this alone can include nausea and vomiting, bloating, feeling of fullness (just after a few bites), abdominal pain, and anorexia, among others. 

And so Ehlers-Danlos patients can experience nutritional deficiencies, which can also impact their hair growth. Their hair might not get enough nutrients. 

Also, the shock of poor nutrition can also trigger a type of hair loss known as telogen effluvium

Side Effect Of Treatments 

Non-steroidal anti-inflammatory drugs like naproxen and ibuprofen are prescribed for Ehlers-Danlos to manage the pain resulting from it. 

Both ibuprofen and naproxen can cause hair loss. 

Other than that, Ehlers-Danlos patients may also be prescribed medication for blood pressure (like beta blockers). And that may also end up causing hair loss. 

Even the stress of surgical treatments that these patients might need can cause telogen effluvium. 

Stress 

Ehlers-Danlos can significantly affect a person’s quality of life. 

Research published in Frontiers in Psychiatry reported that this condition can impact a person’s physical and psychological development. 

Pain, along with “physical restrictions and social disability,” commonly causes anxiety and depression.

Sad young woman

Because of the potential consequences of their condition (like extensive bleeding), such people may also live in constant fear. 

Stress can also cause hair loss, albeit indirectly. It can lead to trichotillomania, trigger alopecia areata, and/or telogen effluvium.

What Is The Treatment For Ehlers-Danlos Hair Loss? 

It might be possible to deal with some types of hair loss resulting from Ehlers-Danlos. 

Unfortunately, the condition cannot be cured, but it can be treated with different medications. And that might help you with your hair as well. 

For instance, your doctor may prescribe you some drugs to help with the gastrointestinal issues resulting from Ehlers-Danlos. And if that helps with your nutritional needs, that may have a positive impact on your hair. 

Hair growth (2)

Hair loss induced by drugs is usually temporary, but you should still talk to your doctor about it. 

The problem with Ehlers-Danlos is that it’s diagnosed quite late. And it affects more women. So, it’s possible that even if you’re experiencing hair loss because of it, it’s blamed on something else. 

Is EDS Hair Loss Reversible? 

If you’re experiencing telogen effluvium in association with EDS, you’ll likely grow your hair back. 

However, in one research mentioned above, Ehlers-Danlos has also been linked to a type of hair loss that looked like androgenetic alopecia. Therefore, it may be possible that you’re unable to grow your hair back. 

However, only your doctor can tell you more about depending on your case. 

Conclusion 

Ehlers-Danlos is a serious illness that can have a significant impact on your physical and psychological health. And while it might not seem like anything (to others), it can also cause hair loss. 

It can happen due to the condition itself, although it’s not exactly known how it can do that. But the other consequences of the condition may be the reason why you end up losing your hair. 

But if you’re experiencing hair loss, it’s important to not jump to conclusions too quickly. You must consult a medical professional for help. They’ll do a proper diagnosis and give you a treatment plan accordingly. 

Reviewed and Approved by Trichologist Yaprak Yazan

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