Hair, Skin and Nails

Hair, Skin and Nail Considerations in hEDS

While it is best known for its effects on joints, hypermobile Ehlers-Danlos syndrome (hEDS) can also affect the hair, skin, and nails. These changes are typically milder than in other types of Ehlers-Danlos syndrome, such as classical or vascular EDS, but they can still have a meaningful impact on daily life, self-image, and quality of life. Both children and adults with hEDS may experience cosmetic and functional challenges related to fragile skin, easy bruising, and nail fragility. This summary highlights the common features, causes, and care strategies for hair, skin, and nail concerns in hEDS.

Skin in hEDS

Common Features

Soft, velvety skin: Often described as smooth and silky to the touch, this is one of the hallmark skin findings in hEDS. It may be especially noticeable in childhood but often persists into adulthood.
Mild skin hyperextensibility: The skin may stretch slightly more than average but generally recoils promptly. This is typically less pronounced than in classical EDS and rarely leads to complications.
Easy bruising: Many people with hEDS bruise easily, often with minimal or no obvious trauma. This is thought to result from increased fragility of small blood vessels (capillaries) and possibly a thinner dermis. In some studies, up to 80% of individuals with hEDS report frequent bruising.
Stretch marks (striae distensae): These may develop more frequently and in unusual locations, even without significant weight changes or growth spurts. The presence of these marks can sometimes cause cosmetic concerns.
Wound healing: While not severely impaired, wound healing is often slower than average. Scars may be thin or widened, especially in areas that experience frequent friction or pressure, such as knees or elbows.
Atrophic (thin, papery) scarring: This type of scarring is uncommon in hEDS and, when present, tends to be mild. The absence of severe scarring helps differentiate hEDS from classical EDS, where atrophic scars are a prominent feature.
Thin skin (as seen on ultrasound): Some adults with hEDS have been found to have a thinner dermis, although this finding is still being studied and may not occur in all individuals.
Skin fragility: While true skin fragility (skin that tears or splits with minimal trauma) is rare in hEDS, minor fragility may be present, especially in older adults. The risk of chronic wounds or spontaneous skin rupture is exceedingly low.

Why It Happens (Theoretical Mechanisms)

Several factors likely contribute to skin differences in hEDS.

Weakened collagen and extracellular matrix proteins: The skin's support structure may be disorganized, resulting in reduced tensile strength and elasticity.
Fragile blood vessels: Microvascular fragility contributes to easy bruising and possibly to delayed wound healing.
Low-grade inflammation: Chronic, low-level inflammation may contribute to abnormal tissue remodeling and skin changes.
Poor skin barrier: Weak connections between skin cells may impair the skin's protective function.
Altered connective tissue signaling: Fibroblasts from people with hEDS may show increased expression of matrix-degrading enzymes, altered integrin signaling, and a tendency toward a myofibroblast-like state, which affects tissue repair and resilience.

Pediatric Considerations

In children, skin differences may be subtle and easy bruising can be mistaken for signs of physical abuse.
Atrophic scarring (thin, sunken, or indented due to loss of underlying tissue) and stretch marks may develop in areas subject to repeated friction or injury.
Pediatric diagnosis is challenging due to natural variability in skin texture and joint flexibility. Features may become more apparent with age.

Age-Related Differences

In adults, cutaneous features are more consistently observed. The skin remains soft and mildly hyperextensible, and bruising is common.
In older adults, age-related skin thinning may accentuate the mild baseline fragility in hEDS, slightly increasing the risk of bruising and delayed healing.

Comorbid Conditions Affecting Skin

Mast Cell Activation Syndrome (MCAS): Often comorbid with hEDS, it can cause itching, hives, flushing, and sensitivity to pressure or temperature changes.
Immunodeficiency: Increases the risk of skin infections and may exacerbate wound healing issues.

Skin Care Strategies

Daily skin care and trauma prevention can help minimize complications:

Use fragrance-free moisturizers and gentle cleansers to maintain the skin barrier.
Avoid trauma by steering clear of tight clothing, rough scrubbing, or activities with high injury risk. Protective clothing may be helpful for some individuals.
Use SPF sunscreen to prevent sun damage, which can worsen skin fragility over time.
For scars, consider silicone gel or sheets to promote optimal healing and minimize widening.
To reduce bruising, consider compression wear or padding in high-risk areas.
Use non-adherent dressings for wounds to avoid skin trauma from adhesive removal.
Avoid unnecessary blood thinners and discuss any bleeding concerns with a healthcare provider.

Experimental and Supportive Treatments

Doxycycline (in lab studies) may improve collagen structure by inhibiting matrix metalloproteinases, though clinical use for this purpose is not established.
Vitamin C and zinc may support skin health, but supplementation should be based on documented deficiencies.

Hair in hEDS (excluding hair loss - see separate article below)

Common Features

Some people report soft or silky hair texture, although this has not been well studied or documented in research.
There are no documented changes in hair shaft structure or fragility specific to hEDS.

Why It Happens (Theoretical)

The same tissue differences that make skin feel soft may contribute to a soft hair texture, though this has not been confirmed.

Hair Care Strategies

Use gentle shampoos and conditioners.
Avoid frequent dyeing, bleaching, or heat styling, which can damage hair.
Use soft brushes and avoid pulling hair tightly, which may prevent breakage.

Other Considerations

Hair-related symptoms such as loss or fragility should prompt evaluation for other causes, including nutritional deficiencies or hormonal imbalances.

Nails in hEDS

Common Features

Fragile nails that break or split easily are common.
Some individuals have slow nail growth, ridges, or spooning (koilonychia, where nails curve upward).
Increased risk of paronychia (skin infection at the nail edge) and onycholysis (nail lifting) may occur.

Why It Happens (Theoretical)

Structural support in the nail matrix may be weak, leading to increased fragility.
Microvascular fragility may impact nail growth and increase the risk of infection.

Nail Care Strategies

Keep nails trimmed and filed to reduce snagging and breakage.
Use hand moisturizers and cuticle oils to maintain skin and nail health.
Avoid harsh polishes and acetone-based removers.
Wear gloves when using cleaning agents or chemicals.
Biotin supplements may improve nail strength, though evidence is limited.

Associated Conditions

Immune deficiency may contribute to frequent nail infections, which should be treated promptly to avoid complications.

Summary

Hair, skin, and nail changes in hEDS are usually mild and not life-threatening, but they can affect quality of life and self-confidence. Soft skin, easy bruising, mild stretch marks, and fragile nails are among the most common features. While skin fragility in hEDS is much less severe than in other EDS types, minor skin injuries and slow wound healing can still be bothersome. Management focuses on gentle care, injury prevention, and addressing comorbidities such as MCAS or immune deficiency. Informed self-care and awareness of age-related changes can help individuals with hEDS maintain skin health and manage symptoms effectively.

Hair Loss in hEDS

Hair loss can be a distressing symptom with a significant impact on self-esteem and quality of life. In individuals with hypermobile Ehlers-Danlos syndrome (hEDS), hair loss is frequently discussed in patient communities. While a direct link between hEDS and hair loss has not been established in clinical research, many people with hEDS report experiencing hair loss. This article explores potential contributing factors, theoretical mechanisms, and known data about prevalence, while emphasizing the need for more research.

Prevalence: What Is Known and Unknown

Not a Recognized Clinical Feature: Hair loss is not listed as a diagnostic or supportive feature of hEDS in current clinical guidelines, consensus statements, or systematic reviews.
Lack of Data in hEDS Studies: Large cohort studies, including one of 154 patients and another of 277 patients with hEDS, did not report hair loss as a common comorbidity. Similarly, GeneReviews (2024) and international consensus documents do not include hair loss among the features of hEDS.
No Comparative Studies: There are no published studies comparing hair loss prevalence in hEDS versus the general population.
High General Population Prevalence: Hair loss, particularly androgenetic alopecia (AGA), is highly prevalent in the general population, affecting over 50% of men and women over age 50. Androgenetic alopecia (AGA) refers to a common hereditary form of hair thinning known as male or female pattern baldness. Other common types include telogen effluvium, which is hair shedding often triggered by stress or illness, and alopecia areata, an autoimmune condition that causes patchy hair loss.
Unanswered Question: Due to the absence of comparative data, it is unknown whether hair loss is more prevalent in people with hEDS. Given significant anecdotal reports, secondary risk factors, and plausible biological mechanisms, it is possible that hair loss may be more common in hEDS, but this has not been proven.

Contributing Factors and Interventions

Nutritional Deficiencies from GI Issues

hEDS is often associated with gastrointestinal problems, including

Irritable Bowel Syndrome (IBS)
Gastroparesis
Small Intestinal Bacterial Overgrowth (SIBO)
Gastroesophageal Reflux Disease (GERD)

These may result in deficiencies of

Iron (especially ferritin)
Zinc
Biotin
Vitamin D
Vitamin B12
Protein

Interventions

Test for deficiencies: CBC, ferritin, zinc, B12, vitamin D, albumin/prealbumin
Work with a GI specialist or dietitian familiar with hEDS
Consider liquid or powder supplements if oral tablets are poorly tolerated

Dysautonomia (POTS) and Chronic Stress

Up to 80% of individuals with hEDS have dysautonomia, often POTS, which may contribute to

Telogen effluvium (stress-related shedding)
Reduced scalp blood flow
Heat intolerance and inflammation

Interventions

Manage POTS: hydration, salt intake, compression garments, medications
Stress management: CBT, yoga, pacing
Support adrenal and glucose regulation

Hormonal Imbalances

Hormonal disturbances common in hEDS may include

Hypothyroidism
Estrogen dominance / low progesterone
Polycystic Ovary Syndrome (PCOS)-like features
HPA axis dysregulation (fatigue, cortisol abnormalities)

Interventions

Labs: TSH, free T4/T3, cortisol, testosterone, DHEA-S, prolactin, LH/FSH
Integrative approaches: Adaptogens such as ashwagandha may help the body manage stress and support hormonal balance. These are plant-based substances believed to promote resilience to physical and emotional stress, though evidence for their effectiveness in hEDS specifically is limited.
Treat based on symptoms and lab findings.

Connective Tissue Fragility and Hair Breakage

Abnormal collagen may weaken scalp skin and hair shafts, potentially causing increased breakage.

Interventions

Use gentle, sulfate-free shampoos
Avoid heat styling and tight hairstyles
Sleep on silk/satin pillowcases
Use silicone serums to protect hair ends

Medication Side Effects

While no hEDS-specific medications are strongly linked to hair loss, some commonly used drugs may contribute

Pain medications (NSAIDs, opioids)
Psychiatric medications (SSRIs/SNRIs)
Dysautonomia treatments (beta blockers, fludrocortisone)

Interventions

Review medication history
Discuss alternatives with a physician if hair loss coincided with a new medication

Theoretical Mechanisms of Hair Loss in hEDS

Though unproven, several biological mechanisms may explain hair loss in hEDS.

ECM and Collagen Disruption: Abnormal extracellular matrix (ECM), including altered collagen types I and III, may affect follicle structure and hair cycle.
Tissue Fragility: Fragile scalp skin may suffer microtrauma, increasing breakage risk.
Impaired Microcirculation: Fragile blood vessels may reduce scalp perfusion.
ECM Signaling Dysfunction: Aberrant ECM composition could alter follicle stem cell signaling.
Mast Cell Activation: Chronic inflammation from mast cell activation may affect follicles.
Small Fiber Neuropathy: Autonomic nerve dysfunction could impact scalp health.

Supportive and Symptom-Targeted Therapies

Scalp Care

Gentle hair care
Silk pillowcases
Scalp moisturizers (aloe, argan oil)

Improve Circulation

Topical minoxidil (available without a prescription)
Gentle scalp massage
Low-Level Laser Therapy (LLLT). LLLT can be delivered via
- In-office devices (offered by dermatologists, hair restoration clinics, or trichologists)
- At-home devices, such as laser combs, caps, helmets, or bands, which are widely available online and in stores

Support Connective Tissue

Vitamin C for collagen
Supplement zinc, biotin, silica (if deficient)
Try collagen supplements cautiously. Caution is advised because collagen supplements have not been well studied in hEDS. People with hEDS often have digestive sensitivities, and supplements may cause GI upset or allergic reactions. Product quality varies, and excessive intake could theoretically affect tissue remodeling. It is best to start low and monitor for effects under medical supervision.

Address Dysautonomia

Treat POTS/low BP with fluids, salt, compression wear, medications (see separate article on POTS)

Advanced Options

Platelet-Rich Plasma (PRP) injections (use with caution). PRP injections use a concentration of the patient’s own platelets, derived from their blood, to promote healing and stimulate hair growth. They are commonly used for androgenetic alopecia. Caution is advised in hEDS due to potential skin fragility, increased risk of bruising, and theoretical concerns about tissue response to injection. Always consult a knowledgeable provider before considering PRP.
LLLT devices (FDA-cleared for hair loss - see Improve Circulation above)

Avoid Triggers

Minimize beta blockers unless necessary. Beta blockers are medications that reduce blood pressure and heart rate. They are sometimes used to manage dysautonomia in hEDS, but they may also reduce scalp blood flow and exacerbate hair shedding in some individuals. Discuss risks and benefits with a healthcare provider.
Avoid tight headwear.

When to Seek Specialist Care

Dermatologist: For diagnosis and scalp biopsy
Trichologist: For hair/scalp analysis
Endocrinologist/Functional MD: For hormonal assessment
GI Specialist/Dietitian: For nutrition and absorption

Summary

Hair loss is not a recognized or well-studied feature of hEDS in the current clinical literature. No direct causative relationship has been established, and the prevalence of hair loss in hEDS remains unknown. However, due to high general population prevalence, significant anecdotal reports, plausible biological mechanisms, and secondary contributing factors, hair loss may be common in people with hEDS. Individuals with hEDS experiencing hair loss should undergo standard clinical evaluation for alopecia causes, with added attention to hEDS-related risk factors, including comorbidities and theoretical causes.

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