Distichiasis, often referred to as a double lash line or double eyelashes, is a rare condition characterized by the presence of two rows of eyelashes on one or more eyelids. In most cases, distichiasis is congenital, which means it’s present at birth. It can be caused by a genetic mutation that’s linked to heart problems. The second row might include a single lash, a few hairs, or a complete set. Compared to normal lashes, the extra lashes are usually thinner, shorter, and lighter. Typically, distichiasis affects all four eyelids, but it can show up on just one lid or the lower lids. The extra lashes come out of the meibomian glands on the edge of the eyelid. These glands normally produce an oil that coats tears, which stops them from drying up too quickly.
Distichiasis (pronounced dis-tic-KAI-asis) is an uncommon condition that results in two rows of eyelashes. The rows may be complete rows, a few extra lashes or a single lash growing next to another. Distichiasis can cause a range of symptoms from minor discomfort to extreme problems. These eyelashes grow from the eyelid’s inner lining instead of along the eyelid’s edge like normal eyelashes. This can cause the abnormal eyelashes to touch the eyeball. This growth can cause damage to the cornea and cause related eye problems that require medical attention.
There are two main ways you can get double eyelashes. If you're born with it, that's called congenital distichiasis. You can also get it later in your life. That's acquired distichiasis.
Congenital distichiasis happens when a cell that's supposed to be part of the system that protects your organs -- called the epithelium -- morphs into something called a pilosebaceous unit. That includes, among other things, a hair follicle.
Distichiasis can be inherited or acquired after birth. Your symptoms and potential complications will depend on the cause.
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The most common cause of congenital distichiasis is a rare genetic mutation of the FOXC2 gene on chromosome 16. This gene helps lymphatic and blood vascular development during embryonic growth. Scientists aren’t sure how this genetic mutation causes double eyelashes.
In some cases, the cause of this form of double eyelashes is a mutation of the FOXC2 gene. It plays a role in the development of many organs and tissues before you're born. The FOX (forkhead box) family of genes codes for a type of protein known as a transcription factor. Specifically, the early development of the kidneys and the heart utilize FOXC2. The mutation in the FOXC2 gene causes a double row of lashes to form during the baby’s development. The double lash mutations are inherited in an autosomal dominant manner. This means that you only need one copy of the mutation to have the genetic condition. For double lashes, about 75% of the time the mutation is inherited from a parent, but for about a quarter of people, the mutation is de novo.
Congenital distichiasis can be a sign of a rare genetic condition called lymphedema-distichiasis syndrome (LDS). LDS involves double eyelashes and lymphedema, or fluid accumulation in the body’s tissues. The fluid, or lymph, leaks from the blood vessels and into tissues. The lymphatic system normally drains and filters this fluid through tubes called lymphatic vessels. But if the lymphatic vessels aren’t working properly, the fluid accumulates in the tissue and causes swelling. People with LDS usually experience swelling in both legs.
In LDS, the lymphatic vessels might be:
LDS is also associated with other conditions, including:
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It’s also possible to inherit distichiasis without lymphedema, but this is extremely rare.
Lymphedema-distichiasis syndrome is a rare genetic multisystem disorder characterized by swelling of the legs because of fluid accumulation and the development of extra eyelashes (distichiasis). Distichiasis may range from a few extra lashes to a full set of extra eyelashes. Swelling most often affects both legs (bilateral) and usually occurs around puberty. Additional anomalies sometimes associated with this disorder include early onset varicose veins, droopy eyelids (ptosis), heart defects, cleft palate, abnormal heart rhythm and abnormal curvature of the spine (scoliosis). Lymphedema-distichiasis syndrome is caused by changes (pathogenic variants) of the FOXC2 gene and is inherited in an autosomal dominant pattern.
Acquired distichiasis, or developing double eyelashes after birth, is less common than the congenital form. It is more common to acquire this condition later in life. Those with congenital distichiasis may tolerate symptoms well and avoid diagnosis until age 5 or older.
It’s caused by inflammation or injury of the eyelid. Common causes include:
Acquired distichiasis can happen if your eyelids get injured or inflamed. You might get this type of double eyelashes if you have:
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Genetics is the biggest risk factor for congenital distichiasis. You’re more likely to inherit the condition if one of your parents has it. In fact, about 75 percent of people who have LDS have a parent with the disorder.
Acquired distichiasis, on the other hand, is caused by certain conditions. These conditions are associated with:
There’s a higher change you’ll get acquired distichiasis if you:
If you have distichiasis, you might not have any other symptoms besides the extra lashes. But you could have:
Many individuals with lymphedema-distichiasis syndrome develop varicose veins, a condition marked by twisted, widened and enlarged veins just below the surface of the skin. In some people, varicose veins may precede the development of lymphedema. In individuals with lymphedema-distichiasis syndrome, varicose veins develop at a much younger age and with greater frequency than in the general population.
Congenital heart disease has been reported in some individuals with lymphedema-distichiasis syndrome, especially a condition known as tetralogy of Fallot. Tetralogy of Fallot consists of a combination of four different heart defects: a ventricular septal defect; obstructed outflow of blood from the right ventricle to the lungs (pulmonary stenosis); a displaced aorta, which causes blood to flow into the aorta from both the right and left ventricles; and the abnormal enlargement of the right ventricle. This combination of abnormalities typically leads to poor blood flow to the lungs and poor blood oxygenation. The symptoms tend to worsen with time if this remains untreated and can be life-threatening.
In some patients, irregular heartbeats (arrhythmias) may develop.
Rarely, additional abnormalities have been reported to occur in association with lymphedema-distichiasis syndrome including crossed eyes (strabismus), incomplete closure of the roof of the mouth (cleft palate), side-to-side curvature of the spine (scoliosis), webbing of the neck, and cysts on the outermost layer of the membranes (meninges) that cover the spinal cord (spinal extradural cysts). Very rarely, patients may have total body swelling prior to birth (hydrops fetalis). Also very rarely, patients may have breathing problems due to abnormal lymph flow in their lungs.
The symptoms of lymphedema-distichiasis vary greatly from person to person even among members of the same family. The most common finding is the extra row of eyelashes (distichiasis). Most patients also develop swelling (edema) or puffiness of the legs because of the accumulation of protein-rich fluid (lymph) in the soft layers of tissue under the skin.
The severity of lymphedema (swelling due to the accumulation of lymph fluid) varies, but usually involves only the legs. In most people, both legs are affected (bilateral). In some people, swelling may cause tightness, discomfort and unusual tingling sensations (paresthesias) in the affected areas. Typically, lymphedema develops around puberty, although it can develop as early as before the person is born or in adulthood.
Males develop lymphedema at an earlier age than females and are more likely to develop cellulitis. Cellulitis is an infection that is often associated with lymphedema. Cellulitis is characterized by swollen, reddened skin that may feel warm and tender.
Associated eye abnormalities may occur including an abnormal sensitivity to light (photophobia), inflammation of the delicate membrane that lines the inside of the eyelids (conjunctivitis), irritation of the curved transparent outer layer of fibrous tissue covering the eyeball (cornea) and the development of a small tender bump on the eyelid (stye).
Humans aren’t the only ones who can have this condition. Dogs can experience distichiasis as well. Symptoms of distichiasis in dogs are typically similar to those in humans. However, since our k9 friends can’t speak like us, here are a few things to watch out for in your friend’s behavior:
Distichiasis in dogs is recognized as a hereditary trait in certain breeds, including the more commonly affected breeds:
Like with their human counterparts, an eye exam is necessary to diagnose the condition in dogs. Treatments may include similar non-surgical and surgical options as for humans.
A diagnosis of lymphedema-distichiasis syndrome is primarily made based upon a thorough clinical evaluation, a detailed patient history and the identification of characteristic findings (i.e., primary lymphedema, distichiasis). FOXC2 molecular testing is available clinically to help confirm a diagnosis.
Your eye specialist can diagnose the condition during a comprehensive eye exam using a slit-lamp.
A variety of specialized tests may be performed to determine the extent of the disorder. Such tests include lymphoscintigraphy or an echocardiogram. During lymphoscintigraphy, a substance known as a contrast medium is injected into a lymphatic vessel (usually in a hand or foot). A series of x-rays are taken that show the medium as it moves through the lymphatic vessels giving physicians a picture of the health and structure of the lymphatic vessels. During an echocardiogram, reflected sounds waves are used to create an image of the heart, which can reveal congenital heart defects potentially associated with lymphedema-distichiasis syndrome.
The goal of treatment for double eyelashes is to get rid of the extra lashes or to ease any symptoms you have. Your doctor could recommend the following. The best treatment depends on the number of extra lashes and your symptoms.
Patients without symptoms usually do not need treatment. If you’re experiencing symptoms, you can seek treatment with your eye doctor. The symptoms and risks of your specific condition will determine the type of treatment your specialist will recommend. Options may include:
If distichiasis is causing symptoms and is left untreated, the cornea could be at risk of scarring, thinning or ulceration.
Treatment The treatment of lymphedema-distichiasis syndrome is directed toward the specific symptoms that are apparent in each individual. Treatment is aimed at reducing swelling and preventing infection. Complete decongestive therapy (CDT) is a form of treatment in which specialized massage techniques are coupled with therapeutic bandaging, meticulous skin care, exercise and the use of well-fitted compression garments such as fitted stockings. Antibiotics may be used to treat recurrent infections such as cellulitis or as a preventive (prophylactic) measure in individuals with recurrent infections.
Distichiasis may be managed with lubrication or plucking (epilation). More definitive treatments for distichiasis include cryotherapy, electrolysis or lid splitting. Cryotherapy is the application of extreme cold to destroy diseased tissue. Electrolysis uses a short-wave radio frequency to destroy the extra eyelashes. Lip splitting is a surgical procedure in which the eyelid is split open to expose the root (follicle) of the eyelashes. Each extra eyelash is then removed (excised). In some cases, cryotherapy or electrolysis is used in conjunction with lid splitting.
In some patients, surgery may be performed to treat other abnormalities such as ptosis or cleft palate. Individuals with heart abnormalities may be monitored regularly.
Genetic counseling is recommended for affected individuals and their families. Other treatment is symptomatic and supportive.
Your eyes let you see the world. That’s why it’s important to take care of them. You might think that having something called double eyelashes would be a good thing. And distichiasis isn’t really a bad thing. You may, however, have eye pain or irritation because of distichiasis. You may have repeated infections like pink eye or styes. You may also have the somewhat more serious condition of lymphedema distichiasis syndrome. Talk to your eye care provider as early as possible if you have, or your child has, these issues. Early detection leads to early treatment and early relief.
Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov.
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