Uncombable Hair Syndrome The Ultimate Guide

Introduction

If you have ever seen a child with uncontrollable hair syndrome, also known as “spun gold syndrome,” you may have been incredibly intrigued.

This disease causes the individual to have hair abnormalities.

For that reason, hair grows in different directions, and having a combed flat hair is impossible.

In addition, every hair strand is triangular and twisted, like the triangle in a standard braid.

It’s usually straw colored hair with a dull texture, and it is most often found in young children, who grow out of it in puberty and adulthood.

In this ultimate guide, I will cover everything you need to know about uncombable hair syndrome.

Additionaly, I will discuss everything from its causes to its treatment options.

Whether you are a parent of a child suffering from the condition, or someone who suffers from it yourself, this guide will provide you with all the information you need.

Description

It’s unclear what causes it, but it might be a rare anomaly of hair shaft formation development.

The cuticle, cortex, and medulla make up the hair shaft formation.

If your hair shaft is unusually structured or protein-depleted, the cortex can be out of shape.

This abnormality affects the hair shaft and its ability to absorb moisture, which often gives you dry and frizzy hair.

Also, you may find it difficult to comb your normal hair flat.

No known treatment

There is no cure for uncombable hair syndrome, but the condition usually goes away on its own in time.

In some cases, treatments such as antifungal shampoos or moisturizing creams may help improve the appearance of the hair.

How common is uncombable hair syndrome?

The precise incidence of uncombable hair syndrome is unknown.

Although scientific literature reported at least 100 cases worldwide are documented.

Some adults who appear normal and not diagnosed may have had uncombable hair syndrome as a child.

Sometime ago, the scientific community and the broad public took an interest in this phenomenon.

What causes this syndrome?

The cause of uncombable hair syndrome is not fully understood.

Even so, there is clinical report that mutations in three genes in the hair shaft formation could be responsible.

The genes identified are PAD13, TGM3 and TCHH.

Equally important, these genes code are the cause for the formation of the proteins that make up the hair shaft.

In most cases, uncombable hair syndrome appears hereditary in an autosomal recessive manner.

What is autosomal dominant inheritance?

Auto-dominant inheritance is a form of gene transmission in which a genetic trait or sickness can pass down through generations.

Besides, one copy of a defective (changed) gene from one parent can induce the condition.

Also, a kid who inherits the mutated gene has a 50% chance of acquiring it.

This syndrome is a rare, inherited condition characterized by uncontrollable hair growth.

Hereditary theory

A recessive trait is usually inherited from both parents.

However, according to research, uncombable hair syndrome passed down in an autosomal dominant pattern is less accurate.

Again, this implies that not all persons who inherit the altered gene will develop the disease.

Those who do will have characteristics of uncombable hair syndrome.

Other genes may also be to blame.

In majority cases, uncombable hair syndrome is a one-time condition.

Otherwise, it seems it does not occur alongside other conditions.

But, few syndromes also include uncombable hair syndrome as one of their characteristics.

These include Kniest dysplasia, Sotos syndrome, and Marshall-Smith syndrome.

The main symptom

The main symptom of uncombable hair syndrome is hair growing in multiple directions.

Consequently, this hair is often described as “spun glass hair” or “steel wool hair” due to its dry, frizzy, and unruly nature.

Your hair may be any color, but is often lighter in color than the eyebrows or eyelashes.

On the other hand, it is interesting to note that infection appears only on the scalp hair.

In some cases, the hair may be so dry and brittle that it easily breaks.

Furthermore, individuals may also develop changes in the structure of their nails and teeth.

List of changes

These changes can include:

  1. Brittle nails
  2. Spoon-shaped nails
  3. Pitted nails
  4. Malformed teeth
  5. Delayed tooth eruption

You may experience other symptoms

People with uncombable hair syndrome may also experience other symptoms, such as:

  • Scaling of the skin
  • Dry skin
  • Atopic dermatitis
  • Eczema
  • Hives
  • Joint stiffness

These symptoms are not universal, and may vary from person to person.

Diagnosis

There is no specific test for uncombable hair syndrome.

Instead, the only test is by evaluating the patient’s medical history and physical examination.

Otherwise, a biopsy of the hair follicles is also used to rule out other causes of uncombable hair.

Such causes include trichotillomania or alopecia areata.

Treatment

There is no definitive treatment for uncombable hair syndrome.

Still, there are a few treatments that may help manage the symptoms.

These include:

  • Using a conditioner or hair oil to tame the hair.
  • Avoid brushing the hair when it is wet.
  • Comb your hair gently and avoid excessive brushing.
  • Getting regular trims to prevent split ends.
  • When blow-drying the hair, use low heat settings.
  • It is important to avoid chemical treatments, such as straightening or coloring.

Coping with uncombable hair syndrome can be difficult.

Some people may find they need to change their lifestyle to manage the symptoms.

This can include avoiding activities that cause sweating.

Also stress should be better managed, as it is a possible cause.

When consulting a doctor, talk about scalp scaling, dry skin or joint stiffness.

This way, your doctor will receive all the relevant information to advise you.

Until there are signs of serious condition, consult a medical specialist.

But be aware that there is still no cure for the condition.

The good news is, there are treatments that can help manage this problem.

Prediction

The prognosis for uncombable hair syndrome varies from person to person.

In most cases, the condition resolves on its own by adolescence.

However, in some cases, uncombable hair syndrome is part of a more serious syndrome.

Moreover, the prognosis will depend on the signs and symptoms present in the person.

People with uncombable hair syndrome should consult a doctor to discuss the best way to manage their symptoms.

Various diseases

Various diseases can also lead to uncombable hair syndrome.

The most common is trichotillomania, which is a disorder characterized by the irresistible urge to pull out one’s hair.

Alopecia areata is another disease that can lead to uncombable hair syndrome.

It is a type of autoimmune disease that causes patches of baldness on the scalp.

There are many other diseases that can cause the symptoms of uncombable hair syndrome.

If you are experiencing these symptoms, it is important to consult a medical professional.

Systematic Research

The American Hair Research Society. is currently conducting research on uncombable hair syndrome.

As long as there is interest in participating in such a study, contact the society.

Some of their published studies suggest:

  1. The role of genetics in uncombable hair syndrome
  2. The effect of hormones on uncombable hair syndrome
  3. The role of the immune system in uncombable hair syndrome
  4. The effect of environmental factors on uncombable hair syndrome
  5. The use of lasers in the treatment of uncombable hair syndrome

Other names

You may come across a few other names, such as pili trianguli et canaliculi, and cheveux incoiffables.

It is also called “spun glass hair”.

These are all alternate names for the same condition, and are not indicative of a different disease.

Look for a specialist who can help you.

You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals.

Furthermore, you may also want to contact a university or tertiary medical center in your area.

In the event you can’t find a specialist in your local area, try contacting national or international specialists.

They may refer you to someone they know through their contacts.

Still, the best way to find a specialist is by asking your doctor for a referral.

Support and advocacy groups

In case you need to connect with other patients and families, join advocacy groups.

These organizations can provide support, information, and resources.

Many also have experts who serve as medical advisors or provide lists of doctors/clinics.

Visit the group’s website or contact them to learn about the services they offer on this rare genetic condition that affects children.

Some organizations that may be helpful include:

  1. American Hair Loss Association
  2. Children With Hair Loss
  3. National Organization for Rare- Alopecia Areata International
  4. Alopecia World (alopeciaworld.com)
  5. National Alopecia Areata Foundation (naaf.org)
  6. The American Hair Loss Council
  7. The American College of Medical Genetics and Genomics

Conclusion

As mentioned earlier, there are resources to assist anyone diagnosed with uncombable hair syndrome.

There is currently no cure for the condition, but researchers are working hard to learn more about it.

In most cases, the condition resolves on its own when you reach adolescence.

Nonetheless, in some cases, uncombable hair syndrome is part of a more serious syndrome.

The prognosis for this depends on the signs and symptoms present in the person.

People with uncombable hair syndrome should consult a doctor to discuss the best way to manage their symptoms.

There are many national and international organizations that can provide support, information, and resources.

Visit their website or contact them to learn about the services they offer.

If you find this article useful, please share it to raise awareness.

 

Disclosure: Just a heads up: My articles may include affiliate links! If you buy something after clicking one of those links, you will not pay any extra money, but I will get a small commission. Many thanks for your support!

Disclaimer: We do not recommend or encourage you to use any of these statements as a substitute for professional medical advice, diagnosis, or treatment. They are for educational purposes only. The FDA has not conducted any studies on them. If you have a medical concern, see your doctor immediately.

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