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Family Fun Day(s) and Meet & Greet in Washington, DC

picnic logo 600We have some fabulous events coming up in July, all happening in Washington, DC.  The first event will on July 15 from 12:00pm to 4:00pm.  Our Picnic on the Mall is a family-friendly FREE event.  Bring your own food and beverages or purchase a boxed lunch at the concession stands located on The Mall. The picnic is open to adults and children.  Visit our Events Calendar to learn more.

That evening, join us for an evening of fun, frolic and fabulous food at The Dubliner located within The Phoenix Park Hotel, just one block from the beautiful Union Station.  Dinner begins at 6:30pm and ends at 9:00pm but feel free to stay longer and listen to live music by Brian Gaffney.  The Dubliner is America’s premier Irish pub, established in 1974, serves hearty Hibernian fare including their world famous Fish’n’Chops and Irish Beef Stew.  Click here for ticket information and to reserve your seat!

A stay in Washington, DC is not complete until you have visited world’s largest museum, education, and research complex.  We will also be sponsoring a Family Fun Day on July 16 for an afternoon touring the National Air and Space Museum (one of my personal favorites and always a hit with kids!). The Smithsonian is a free museum and open to the public.  The Smithsonian’s National Air and Space Museum maintains the world’s largest and most significant collection of aviation and space artifacts, encompassing all aspects of human flight, as well as related works of art and archival materials. It operates two landmark facilities that, together, welcome more than eight million visitors a year, making it the most visited museum in the country. It also is home to the Center for Earth and Planetary Studies. Visit our Events Calendar to learn more.

We look forward to seeing you there!  Questions?  Contact melanie@worldalopeciacommunity.org.

Learning to Thrive Series: Amy Johnson

One of the best things about being part of a global alopecia community is that we enjoy meeting people who also have alopecia and are learning to thrive with alopecia every day, every where in the world. For this installment, we’re visiting with Amy Johnson, the Communications/Fundraising Manager of Alopecia UK, a charity organization based in the UK whose vision is to improve the lives of those affected by alopecia.

Alopecia is something in my life, but isn't something that should change the person I am.

Alopecia is something in my life, but isn’t something that should change the person I am.

Q. When were you diagnosed with alopecia areata?

I first had two small patches of Alopecia Areata in October 2007. They quickly grew back. By 2010, I had lost everything. I have experienced different degrees of patchy regrowth since 2012.

Q. How has alopecia changed you as an individual?

I’d like to think that alopecia hasn’t changed me too much. I take the approach that alopecia is something in my life, but isn’t something that should change the person I am. Saying that, it has had a BIG impact on me in that I have ended up working for an alopecia charity so I suppose you could argue it has become my life! Read more…

To Boost or Not To Boost – The Immune System Explained

Oftentimes when people are first diagnosed, it’s because they find a bald spot which may lead them to believe that alopecia areata is specifically about their hair and the loss of it. However, alopecia areata is more about the immune system than it is about the hair follicle itself.

Certain portions of the human body have ‘immune privilege,’ meaning they are able to tolerate the introduction of foreign substances without eliciting an inflammatory immune response. Our hair follicles (primarily the epithelium surrounding the hair follicles) are part of the skin immune system. Our skin immune system is constantly signaling and talking to keep our lymphocytes at bay — letting them know that they are, indeed, supposed to be there. Read more…

Treatments for Alopecia Areata

Treatment Options for Alopecia AreataA number of treatments can help hair regrow but none alter the long-term course of the disorder. Spontaneous remission occurs in up to 80% of patients with limited patchy hair loss of short duration (< 1 year) making it difficult to assess efficacy, particularly in mild forms of alopecia areata.[3]

Some trials have been limited to patients with severe alopecia areata where spontaneous remission is unlikely. However, these patients tend to be resistant to all forms of treatment and the failure of a treatment in this setting does not exclude efficacy in mild alopecia areata. There are numerous case reports and uncontrolled case series claiming response of alopecia areata to diverse treatments. However, few treatments have been subjected to randomized controlled trials and, except for contact immunotherapy, there are few published data on long-term outcomes.

Corticosteroids

Topical corticosteroid therapy can be useful, especially in children who cannot tolerate injections. It is administered as follows:

  • Fluocinolone acetonide cream 0.2%, betamethasone dipropionate cream 0.05%, or clobetasol 0.05% foam are the most common forms prescribed
  • Topical cream or foam should be applied to the affected area and 1 cm beyond the circumference of the bald patch daily
  • Treatment must be continued for a minimum of 3 months before regrowth can be expected, and maintenance therapy is often necessary
  • For alopecia totalis or alopecia universalis, 2.5 g of clobetasol propionate covered with a plastic film 6 days/wk for 6 months helped a minority of patients
  • Side effects include skin atrophy, folliculitis, or telangiectasia
  • 28.5%-61% of patients achieve regrowth — 37.5% of patients experience relapse[4] Read more…

4 Myths I Didn’t Need To Believe About My Chronic Illness

In an ideal world, we’d all support our body’s miraculous ability to heal itself and develop new cells through our lifestyle choices. Whether through the food we choose, physical activity, the amount of rest we receive, or even the conversations we have, everything would either contribute to our ongoing good health or inhibit our body from being well or healing.

This is even true when it comes to autoimmune disease. Often, when a person is diagnosed with an autoimmune disease, medications are prescribed with little to no explanation about the disease and how our lifestyle impacts that condition. Read more…

Association Between Vitamin D Levels & Alopecia Areata

AE 14A recent study out of Turkey found that in those with alopecia areata, low vitamin D levels are common and may relate to a more severe disease state.

Vitamin D has a well-established effect on the immune system and is linked to a variety of autoimmune diseases. Researchers have found that vitamin D may be able to help in some aspects of autoimmune diseases, such as multiple sclerosis, lupus, and type 1 diabetes. That being said, there hasn’t been any research looking at the relationship between vitamin D and AA.

Recently, researchers at the Şişli Etfal Eğitim ve Araştırma Hastanesi (Training and Research Hospital) in Turkey conducted a study to determine if vitamin D levels relate to AA and how vitamin D may affect disease severity. Read more…

Lifetime incidence rate of Alopecia Areata raised to 2.1%

AE 8In 1995, the Mayo Clinic released a study on the incidence rate of alopecia areata in Olmsted County, Minnesota consisting of 292 participants who were newly diagnosed with alopecia areata from 1975 to 1989. This study set the only known lifetime risk for alopecia areata at 1.7%. (Lifetime risk means the risk of developing a disease during ones lifetime.) A newer study, with 530 qualifying participants, was recently released accessing the same data parameters but from 1990 to 2009 to document the most current lifetime incidence risk. They found that the risk of a person developing alopecia areata during their lifetime has increased to 2.1%.

Nearly 6.7m people in the U.S. (over 149m worldwide) will develop alopecia areata in their lifetime.

At 2.1%, the cumulative lifetime incidence of AA from this recent 20-year period was slightly higher than 1.7% observed in the older study. Similarly, REP data analyzed in studies of other autoimmune-associated diseases have shown that incidence of rheumatoid arthritis and systemic lupus erythematosis have also increased in the region in recent years. These data do not refute the hypothesis that autoimmune disease incidence maybe rising, generally.


Source: http://www.nature.com/jid/journal/v134/n4/full/jid2013464a.html

Frequently Asked Questions

Who Gets Alopecia Areata?

Alopecia areata (AA) affects approximately 2.1% of the population and does not discriminate based on sex or ethnicity. Anyone can have alopecia areata. It often begins in childhood. If you have a close family member with the disease, your risk of developing it is slightly increased. If your family member lost his or her first patch of hair before age 30, the risk to other family members is greater. Overall, one in five people with the disease has a family member who has it as well. Read more…

Alopecia Areata

What is alopecia areata?

Alopecia (al-oh-PEE-shah) areata (ar-ee-AH-tah) is a recurrent nonscarring type of hair loss that occurs when your immune system mistakenly attacks hair follicles, which is where hair growth begins. It can affect any hair-bearing area, may manifest in many different patterns, and more than one area can be affected at once. Frequency of involvement at particular sites is as follows:

  • Scalp – 66.8%-95%
  • Beard – 28% of males
  • Eyebrows – 3.8%
  • Extremities – 1.3%

Image of patchy alopecia areata hair loss.Although it is a benign condition and most patients are asymptomatic, it can cause emotional and psychosocial distress. Self-consciousness concerning personal appearance can become important. Openly addressing these issues through support groups is important in helping them cope with the condition. The damage to the follicle is usually not permanent. Experts do not know why the immune system attacks the follicles. Alopecia areata (AA) is most common in people younger than 20, but children and adults of any age may be affected. Peak incidence appears to occur from age 15-29 years. As many as 44% of people with alopecia areata have onset at younger than 20 years. Onset in patients older than 40 years is seen in less than 30% of patients with alopecia areata. Data concerning the sex ratio for alopecia areata vary slightly in the literature. In one study including 736 patients, a male-to-female ratio of 1:1 was reported.[1] In another study on a smaller number of patients, a slight female preponderance was seen. This disorder most often occurs in otherwise healthy people. Read more…

How Does Alopecia Areata Present Itself?

The natural history of alopecia areata is unpredictable. Extreme variations in duration and extent of the disease occur from patient to patient. Alopecia areata most often is asymptomatic, but some patients (14%) experience a burning sensation or pruritus in the affected area. The condition usually is localized when it first appears. Of patients with alopecia areata, 80% have only a single patch, 12.5% have 2 patches, and 7.7% have multiple patches. No correlation exists between the number of patches at onset and subsequent severity. Alopecia areata most often affects the scalp (66.8-95%); however, it can affect any hair-bearing area. Read more…