Alopecia Universalis – No trivial matter

You have read a story like it in the paper – area man loses all hair after car accident – but it just didn’t seem real. All your hair? Impossible. What about your eyelashes and arm hair and such?

The scary truth is that this can and does happen. It is an unpredictable medical condition known as alopecia universalis, and no one really knows the cause or how to cure it. If you are one of the rare people affected by this diagnosis, here is some of what you need to know.

Help! Universalis -ly confusing!
Let us start with the basics; the word alopecia refers to hair loss – any hair loss. The word “alopecia” is not a diagnosis so much as a term used to describe a medical condition. However, when all of the hair on the body is involved, the diagnosis of alopecia universalis is given. If only the scalp hair is involved then this is termed alopecia totalis. Also, if only small patches are present, the diagnosis is alopecia areata but even in this case the hair loss can sometimes be diffuse or, more confusingly, affect brow and eyelash or beard hair.

It is thought that all the various manifestations of these conditions may be part of the same physiologic process – that is to say they might both be the same disease, just different degrees of it, but no one is really sure. It is also thought that these might represent autoimmune disorders – diseases caused when the body attacks its own tissues.

However, genetic factors and environmental triggers may also play a role in when the body decides to manifest the symptoms. For instance, patients often mention that hair loss started during or shortly after a stressful situation, and sometimes patients experience complete remission of their symptoms without treatment or explanation…

Unusual Symptoms
Other symptoms include changes to the nails (pitting, ridging, and brittle nails) and associated medical problems like asthma, allergic rhinitis, or dermatitis. Because this problem is thought to be inflammatory or autoimmune in origin, it is interesting that these and other autoimmune disorders (like rheumatoid arthritis, lupus, and inflammatory bowel disease) can be associated with it too. Remarkably, thyroid diseases also are more common in patients with one of these alopecias. But having hair loss does not necessarily mean that you will get any other symptoms.

Patients with any one of these alopecias (aka different kinds of hair loss) do report itching, tingling, and burning sensations that are unexplained in the areas that then lose hair. Other strange symptoms like preservation of white hairs when all the other hairs fall out have been reported too. These alopecias tend to run in families so some genetic basis has been postulated, but the definitive inheritance route is by no means clear. What is known is that each patient can be affected differently, with body hair loss as well as scalp hair loss in a whole variety of patterns, which is why the problem is more complicated than the general term “hair loss” would seem to indicate.

Diagnosing – this is the tricky part…
Since many forms of alopecia – hair loss – can look-alike, and since the treatment is completely different depending on which type you have, getting the right diagnosis is essential. To this end, hair doctors and dermatologists will often recommend getting a scalp biopsy with one or two small samples to confirm the diagnosis and rule out other possibilities. The size is usually about 4 mm (about the width of two quarters stacked on top of one another) and the sample(s) are sent to a special doctor called a dermatopathologist because these doctors are more familiar with looking for these diseases. Blood tests do not necessarily help although, again, some might be ordered just to rule out other potentially treatable diagnoses.

Treatment
There is no single treatment for alopecia universalis, alopecia areata or alopecia totalis. Often steroids (oral, or injected) are tried to help stimulate re-growth, but many other drugs can be used. Immune system suppressing agents and light therapies (PUVA) are two examples. Topical minoxidil (Rogaine 5%) can also be helpful and almost all of these treatments can be used in combination with one another (and they might work better that way, too!).

The important issue is to try to get a diagnosis and start treatment quickly. Sources for help for all alopecia patients (or just someone with hair loss) include the National Alopecia Areata Foundation (naaf.org) and a good dermatologist from the American Academy of Dermatology or hair doctor from the International Society of Hair Restoration Surgery (AAD.org or ISHRS.org).

Covered with hair – one way or another!
For those who never got treatment or whose loss (whether partial or full) became permanent for whatever reason, camouflage is the next step. Fortunately, a multitude of excellent options are available and no patient should fear the process of exploring what “look” they like best! Wigs, tattooing, hair systems, and even hair restoration surgery can give lovely cosmetic results.

For optimal aesthetics, plans should be tailored to the individual and include both short and long-term strategies. For instance, patients should consider that not all tattoos age well and some non-surgical hair replacement systems (wigs or extensions) can damage any remaining hair that they cover or attach to if used over a long period of time.

Regardless of the treatment or camouflage ultimately used, taking the initiative is key. Hair loss is emotional and as a consequence many patients delay seeking treatment either due to fear or simple denial. Take heart and take control! Finding out what is going on and what treatments will work for you is the best way to make sure that hair loss is a footnote and not the headline of your life.

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