Ehlers-Danlos Syndromes (EDS) are a group of inherited connective tissue disorders that result from defects in collagen synthesis and structure. Collagen is the most abundant protein in the human body, providing strength and elasticity to skin, joints, blood vessels, and organs. Because EDS directly affects this fundamental protein, it creates a wide range of systemic symptoms, including those involving the skin and hair. Hair loss is a reported symptom for many individuals with EDS, stemming from both the primary connective tissue defect and associated secondary factors.
Ehlers-Danlos Syndrome and Structural Integrity
The direct link between Ehlers-Danlos Syndrome and hair thinning lies in the faulty collagen that forms the structural architecture of the scalp. Collagen is not only a major component of the skin’s dermal layer but also plays a role in anchoring the hair follicle within the dermis. When collagen structure is compromised, the integrity of the hair follicle’s support system can be weakened.
This structural deficiency can reduce the tensile strength of the scalp tissue, potentially leading to a looser hold on the hair shaft. Furthermore, a specific part of the hair follicle, the hair papilla, is rich in collagen, and abnormalities here may directly impair hair production and growth. While the exact mechanism is still being researched, some rarer types of EDS, such as AEBP1-related classical-like EDS, have been observed to feature hair loss as a consistent clinical characteristic.
In some cases, the generalized fragility of connective tissue may also affect the microcirculation within the scalp. Fragile blood vessels, a hallmark of some EDS types, might not efficiently deliver the necessary nutrients and oxygen to the hair follicles, thereby causing them to weaken and prematurely enter the shedding phase. Diffuse thinning across the scalp has been noted in individuals with vascular EDS, a type known for particularly fragile blood vessels.
Secondary Contributors to Hair Thinning
Hair loss in Ehlers-Danlos Syndrome patients is often multifactorial, with many secondary conditions associated with EDS contributing to the problem. Nutritional deficiencies frequently play a significant role due to the gastrointestinal issues common in EDS, such as gastroparesis or general motility problems. These issues can cause malabsorption.
Deficiencies in iron, zinc, Vitamin D, and various B vitamins (particularly B12 and folate) are commonly observed in EDS patients and are necessary for hair growth. Low levels of these micronutrients can disrupt the rapid cell division required for hair production, leading to generalized thinning.
The chronic nature of the condition also creates a state of systemic stress that impacts hair health. Persistent pain, frequent injuries, and the emotional burden of chronic illness can trigger Telogen Effluvium. This is a temporary form of hair loss where growing hair follicles abruptly shift into the resting (telogen) phase, resulting in noticeable shedding two to four months after the stressful event.
Certain medications used to manage EDS-related symptoms can also be a source of hair thinning. Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, often prescribed for chronic pain, list hair loss as a possible side effect. Similarly, some blood pressure medications, including beta-blockers, which may be used to manage conditions like Postural Orthostatic Tachycardia Syndrome (POTS), can also contribute to excessive hair shedding.
Differential Diagnosis for Hair Loss
It is important to recognize that not all hair loss experienced by an individual with Ehlers-Danlos Syndrome is solely a result of the connective tissue disorder. A number of other conditions, some of which frequently co-occur with EDS, must be considered as potential causes. Endocrine disorders, particularly thyroid dysfunction such as hypothyroidism or hyperthyroidism, are common and can cause diffuse hair loss.
Autoimmune conditions, including Alopecia Areata, where the immune system attacks hair follicles, also show an increased susceptibility in individuals with EDS. Hair loss may also be caused by standard hormonal factors, such as female or male pattern baldness (Androgenetic Alopecia), or temporary shifts like post-partum shedding.
A thorough medical evaluation is necessary to distinguish the cause of hair thinning. This typically involves blood work to check for deficiencies in iron, Vitamin D, and thyroid hormone levels, which are easily corrected once identified. Identifying the underlying trigger (structural, nutritional, hormonal, or stress-related) directs the most effective course of action.
Management and Care Strategies
Managing hair loss in the context of Ehlers-Danlos Syndrome requires a comprehensive approach that addresses the multiple underlying factors. Nutritional support is a primary focus, and targeted supplementation based on current blood test results is recommended to correct deficiencies in Vitamin D, B vitamins, and iron. Working with a healthcare provider to establish appropriate dosing is important, especially when malabsorption is a factor.
Adopting gentle hair care practices can help minimize physical trauma to the fragile hair and scalp. This includes avoiding tight hairstyles that pull on the roots, minimizing the use of high heat styling tools, and using wide-toothed combs for detangling. Because the scalp skin is delicate, harsh chemical treatments should generally be avoided.
A medical review of all current prescriptions is a practical step to identify any medications that list hair loss as a side effect. Consulting with a dermatologist who is familiar with connective tissue disorders can also provide specialized treatment options, ranging from prescription topical treatments to addressing underlying scalp conditions. Addressing the chronic pain and systemic stress associated with EDS through appropriate pain management and supportive care may also help to reduce Telogen Effluvium shedding.