Ehlers-Danlos Syndrome (EDS) is a collection of hereditary disorders affecting connective tissues. These conditions stem from a defect in the production or processing of collagen, the body’s most abundant protein. Collagen provides structure and strength to tissues like skin, joints, blood vessels, and organs. While EDS is known for symptoms like joint hypermobility and fragile skin, it can also impact hair health. This often leads to hair loss (alopecia), linked both to the underlying collagen defect and to systemic issues associated with the condition.
The Direct Link: Collagen and Hair Follicle Integrity
The primary biological connection between Ehlers-Danlos Syndrome and hair loss lies in the compromised structure of the scalp tissue itself. Hair follicles are deeply embedded within the dermis, a layer of skin that relies heavily on a strong collagen network for its integrity and support. In EDS, the defective collagen fails to provide this necessary structural scaffolding. This weakened connective tissue environment can lead to a less stable anchoring of the hair shaft within the follicle, resulting in increased shedding or a more fragile hair structure prone to breakage. Collagen is also composed of amino acids that are building blocks for keratin, the protein making up the hair shaft. Therefore, a systemic problem with collagen production may indirectly affect the quality and strength of the keratin produced.
Secondary Factors: Nutritional Deficiencies and Comorbid Conditions
Hair loss in people with EDS is often multifactorial, involving several systemic issues.
Nutritional Deficiencies
Many individuals experience significant gastrointestinal (GI) problems, including dysmotility, which can lead to malabsorption. This means the body struggles to properly absorb essential nutrients from food. Deficiencies in micronutrients crucial for hair growth are frequently seen, including Iron, Zinc, and Vitamin D. Low levels of Iron and ferritin can trigger telogen effluvium (temporary hair shedding). Inadequate absorption of Vitamin D and Zinc also negatively impacts the hair follicle cycle and contributes to thinning.
Medication Side Effects
Medications used to manage chronic EDS symptoms can also cause hair loss. Non-steroidal anti-inflammatory drugs (NSAIDs) for pain, or beta-blockers prescribed for autonomic dysfunction (dysautonomia), are known side effects. This medication-induced shedding is often a form of telogen effluvium that may only resolve if the medication is adjusted or stopped.
Comorbid Conditions and Stress
Individuals with EDS have a higher prevalence of comorbid conditions that independently cause alopecia. Thyroid dysfunction, for instance, is common and severely impacts hair health. The chronic physical and psychological stress from widespread pain and fatigue can also trigger hair loss. Stress may also exacerbate underlying autoimmune conditions like Alopecia Areata, where the immune system attacks the hair follicles.
Diagnosis and Targeted Management
Addressing hair loss in a person with EDS requires a targeted diagnostic approach. The first step involves laboratory testing to identify correctable nutrient deficiencies or underlying medical conditions. A full blood panel should include a complete thyroid panel, inflammatory markers, and a detailed check of Iron, Ferritin, Zinc, and Vitamin D levels.
If malabsorption is suspected due to GI symptoms, working with a healthcare provider and a registered dietitian is beneficial. Dietary management may involve specialized diets, such as a low FODMAP protocol, to ease GI distress and improve absorption. Supplementation with identified deficient vitamins and minerals can be an effective intervention under medical guidance.
Management also involves a careful review of all current medications, as drug-induced hair loss is reversible once the causative agent is identified. For hair loss that is directly structural, supporting connective tissue health through targeted supplementation can be considered. A multidisciplinary team approach that addresses structural pathology, nutritional status, and comorbid conditions offers the best path for managing alopecia related to EDS.