7-Year-Old Evan Moss's Inspiring Fight Against Epilepsy

7-Year-Old Evan Moss's Inspiring Fight Against Epilepsy

Evan Moss's story is one of those inspirational stories that makes one stop what he or she is doing and marvel at the strength of will some children display.

Evan started having seizures within his first month of life. By the time he was 4-years-old, he was having 300-400 seizures a month. Every day, the normal activities of a toddler would be interrupted about 10-15 times by epileptic seizures.

At the time, his parents Lisa and Rob Moss made the difficult decision for Evan to undergo brain surgery. "I remember thinking, we're making this decision for another person, and he can't even have any say in it," Lisa told The Huffington Post. Evan left the hospital seizure-free, and enjoyed a two-year respite from seizures.

That good fortune would prove not to last. Now, Evan is 7 and suffers from about 3-4 seizures a month. "He seems to be on a cycle where roughly every 8 to 10 or 12 days, he has a seizure. They always happen in his sleep, and last a long time," Lisa said. "They start very quietly, and we can usually tell because he sleeps in between my husband and I, and one of us always has one hand on him."

In an attempt to provide Evan with more security and independence, the Moss family has embarked on an ambitious project. They asked Evan if he wanted to write a book that could help them fundraise the $13,000 needed to get a seizure dog that would come alert Evan's parents if he was having a seizure.

Evan always enjoyed writing, Lisa said. His favorite activity in school was the "writing center," where students were handed pieces of paper stapled together into makeshift books. "By the end of the year, we had a stack of Evan's books about 9 inches high," she said.

As part of the extensive process of applying for a seizure dog, the organization tries to ensure that the student actually wants a dog. They ask for a letter or drawing from the child, and Lisa said Evan was eager to write a book instead.

Once Lisa and Rob showed the book to family members, an idea came to her. She scanned the drawings and typed up the text -- which Evan had written himself -- into a word document and eventually self-published the book on Create Space, a web publishing outlet owned by Amazon.

The end product, "My Seizure Dog," is a cute book that could do well as a gift for parents and children looking for inspiration. Younger children could read the book as a window into a life of a peer that's facing serious struggles, and parents will likely feel their heartstrings tugged by Evan's sincerity and willingness to take his fundraising and health into his own hands.

Lisa says when most people have seizures, the episodes resolve on their own or they come out of them relatively quickly and have to recover. But in Evan's case, he doesn't come out of them on his own. "After a seizure lasts 5 minutes or longer, it's considered dangerous and that's when medical attention becomes necessary. Evan's always last longer than 5 minutes, so we're constantly administering emergency medication -- sometimes two doses."

The seizures Evan experienced prior to surgery were quick and relatively low-key. He wouldn't lose consciousness, and Lisa says that sometimes someone standing next to him wouldn't notice. The seizures he has now, however, are far more serious, and it's not uncommon for the Moss family to call 911.

"We have a very nice relationship with the EMTs that respond," Lisa said. "The crew has been here before and they understand what we're dealing with."

When asked if Evan understands his health issues, Lisa said that she thinks so. "Evan has a pretty good understanding of it, and we've also created a website to track Evan's seizure activity. I'm also on the board of directors for the National Epilepsy Foundation. As a result of these activities, we attend a lot of family conferences, walks and events, so he knows other kids have it and he's very open about it," she told The Huffington Post. She added, "He'll run right up to people with dogs and tell them, 'I'm getting a dog that will tell my parents when I have a seizure!'"

Evan's condition hasn't only affected his life. His father, Rob, is a photographer, but he's minimized his work in order to be with Evan as much as possible. Lisa, who was a photo editor at AOL for many years, says it's a hard balance for everyone in the family. "We joke that his 9-year-old sister, Aria, knows more about epilepsy than most adults," she said. "Sometimes I think I worry more about Aria than Evan, because we know what we're dealing with with Evan, but sometimes I worry more about Aria and how it's going to impact her, having lived this life with a sibling with a chronic medical condition. That's something we try really hard to balance, but I don't know if you ever really can."

"The first thing we do when we travel is go meet the local emergency response team and give them a heads-up," she added. "We've spent holidays in the hospital, birthdays in the hospital, and it changes a lot. These are things neither of them should have to deal with."

The family is holding on. Lisa sounds upbeat and determined on the phone, and reports that Evan is cheery -- especially after he recovers from a seizure. "He's in the absolute best mood you can imagine after he gets up after having slept off medication after a seizure," she said. "He feels like he's on top of the world. Rob and I will be a mess, but he's singing and walking through the house and getting some cereal."

"But there's a reason we're [fundraising and getting Evan a seizure dog]," she said. "Evan sleeps with us, and we're not sure how much longer that's going to be ok."

For now, they are parents sleeping half-awake, with one arm resting on their son, hoping he enjoys a night uninterrupted by a visit from paramedics.

Bed sharing with a toddler

Bed sharing with toddler – no harm, no benefit for kids over 1

Is it harmful to your child's development to have your toddler sleep with you?  Experts can't seem to agree on whether it’s a good thing or bad but a new study finds that it may not be harmful to children  as long as the child is at least a year old.

It’s called bed-sharing, where parents and a child sleep in the same bed.  It's not as common in the United States as in other countries, but it's more prevalent among certain ethnic groups.

According to the American Academy of Pediatrics, it's not advised for parents to ever sleep with infants before the age of 6 months.  That's the time when babies are most at risk for sudden infant death syndrome.   But the study authors and the AAP agree that once a child is 12 months old , co-sleeping or bed-sharing with parents is really up to the preference of the family.  However, the goal for any sleep arrangement is to get safe, adequate sleep.  If bed-sharing is getting in the way of a good night's sleep or is dangerous in any way for your child, then it's not a good idea.

The study authors set out to find out whether toddlers  who slept with their parents would have social or developmental issues by the time they reached kindergarten.  The researchers interviewed 944 low-income families and looked at whether  children between the ages of 1 and 3 slept in the same bed as their parents.  The experts found no signs that children who shared a bed with their parents had developmental problems at age 5.  The study was published in the journal Pediatrics on Monday.

"When you compare mothers of the same ethnicity and the same levels of education, whether they bed-share or not, does not predict a difference in cognitive or behavioral outcomes in their children," explains study author Lauren Hale, Ph.D., associate professor of preventive medicine at Stony Brook University in Stony Brook, New York.

Hale and other researchers measured math, early literacy and social skills in the children. They even looked at levels of hyperactivity and found no cognitive or social differences between children who bed-shared and those who did not.

"There are a number of reasons why parents decide to share a bed with their children such as safety, security, to facilitate breast-feeding,  in response to sleeping problems, to provide emotional support, living conditions, etc.  Understanding those reasons can provide clues to the outcomes of bed-sharing on children's later behavior and cognition,” Dr. Lynne Haverkos with the National Institutes of Health, the organization that funded the study.

Experts agree that what's most important, is that everybody gets a good night's sleep.  For some families bed-sharing disrupts both the parents' and the child's sleep. For others it works well.

"If a family is going to bed-share, both parents must agree to it,"  explains Brett Kuhn, associate professor of pediatrics and psychology at the University of Nebraska Medical Center in Omaha.  "Make sure it's planned and intentional and that you do it from the beginning of the night to the end of the night.  You're not going to play musical beds when the child fusses."

Bringing a child into your bed to stop repeated episodes of crying may not only interrupt parental sleep but  interfere in the child's ability to soothe himself to sleep.

Haverkos says more studies are needed to look more closely at the risks and benefits of bed-sharing, but that the best bet is to discuss the issue with your pediatrician or health care provider.  What qualifies as a safe and satisfying sleep arrangement for one family may not be the same for another.

'Big Bang Theory' actress Mayim Bialik a real-life scientist

'Big Bang Theory' actress Mayim Bialik a real-life scientist
By Elizabeth Landau

You may remember her as the title character from NBC's "Blossom," or recognize her as brainy Amy Farrah Fowler on the CBS hit comedy "The Big Bang Theory."

Mayim Bialik has made a name for herself in the entertainment business, but she's also had a lesser-known career in a similar field as her "Big Bang Theory" character: neuroscience.

Bialik, 35, who will attend her first San Diego Comic-Con next week, studied neuroscience at the University of California, Los Angeles. She's also written a book about parenting based on the science of hormones involved in parent-child bonding, to be released by Simon & Schuster in 2012.

"Not that you need a neuroscience degree to be a good parent... but my reflections on parenting are absolutely informed by my understanding of the hormones of attachment, which were the subject of my thesis," she said.

The daughter of teachers and the granddaughter of European immigrants, Bialik was studious as a teenager and always knew she wanted to go to college, even while on "Blossom."

"I basically walked off the television and onto the UCLA campus," she said.

She earned an undergraduate degree in neuroscience and Hebrew and Jewish studies before moving on to advanced studies. Frat guys would make silly comments sometimes because of her former TV life, but generally her science classmates seemed to mostly keep their noses in their books. "I had to earn my way through based on my intellect and my brainpower," she said.

Her Ph.D. research at UCLA focused on obsessive compulsive disorder among people with Prader-Willi syndrome, a rare condition in which the hypothalamus malfunctions. The hypothalamus secretes the hormones oxytocin and vasopressin.

Her research on these hormones, which are critical to the mother-child bond, helped her understand biological mechanisms involved in parenting.

For instance, while some mothers complain about having to breastfeed their infants about every two hours all night, Bialik appreciates a deeper significance. The hormones that make a mom feel closer to her child get refreshed during breastfeeding. So if babies want milk every two hours, that guarantees a frequent rush of hormones that bond mother and child.

Breastfeeding, sleeping close to your baby and keeping him or her close to you as much as you can are all part of the natural human process, she says. Bialik is also an advocate of "gentle discipline," or not using physical force against children.

"We're starting to see more and more research substantiating that children hurt when you hurt them," she said.

Bialik had originally intended to become a research professor, but she and her husband decided that academic life wouldn't allow them to spend as much time with their children.

For their two sons -- "an almost-6-year-old and an almost-3-year-old" -- she and her husband don't use nannies, babysitters or daycare, and don't even rely on family members to look after their children. Bialik's husband stays at home when she's working, which is about every other week.

And they're considering continuing to homeschool their children. There's a large homeschool community in their area of Los Angeles, so it's not necessarily an isolating experience. There are opportunities to have a structured curriculum with other homeschooled children, she said.

The flexibility of the schedule of homeschooling, and the opportunity to spend time with their children for most of their day, appeal to Bialik and her husband. So does the independence from standardized testing.

"Especially with our kids who are 'late bloomers,' we're happy to watch them develop at their own pace," she said. "We like to know what they're learning and how."

As if it's not enough to be a mom and an actress on a popular sitcom, Bialik designed a neuroscience curriculum for homeschooled middle-schoolers. She taught 10 lucky kids all about the brain two years ago -- everything from the the brain's structure to the spinal cord to how the senses work, in addition to the ideas of the "early heavy hitters" of neuropsychology like Sigmund Freud and Ivan Pavlov.

"I think neuroscience is obviously very esoteric, but I think there are aspects of it that absolutely be brought down to the level of an interested 11-, 12-, 13-year-old easily."

This past year, she taught biology and chemistry to three different classes in the homeschool community for elementary and middle school students.

Sometimes writers and producers on "The Big Bang Theory" ask Bialik questions related to her character's neuroscience background, although the show also has a physics consultant who provides notes on scientific accuracy, too.

"I don't think I've met a smarter group of people who hang out together, possibly ever, even in graduate school, than our writers and producers," she said.

Although many fans are looking forward to seeing Bialik at Comic-Con, she's nervous about the experience.

"I'm a pretty quiet person. I think it's going to be a lot of people. But I think it will be fun. I'm glad to be able to go with the cast. I'm friendly with the people that I work with, which is nice, so we get to do it together."

Drugs cut heterosexual HIV risk

Taking meds before exposure cuts HIV risk for heterosexuals

Heterosexuals who are HIV negative can significantly reduce their risk of infection by taking a daily dose of an antiviral drug, according to a new study by the Centers for Disease Control and Prevention.

The study, called TDF2, followed 1,200 uninfected heterosexual men and women between the ages of 18 and 39 years in Botswana, Africa.

Study participants took a tablet containing tenofovir disoproxil fumarate and emitricitabine (TDF/FTC), whose brand name is Truvada, or a placebo. On average, patients were followed for a year although some were followed for about three and a half years. The risk of infection was reduced 63% overall, but for participants who actually got the drugs, that risk decreased by 78%.

Giving daily antiretroviral drugs to uninfected individuals to prevent the disease is called pre-exposure prophylaxis or PrEP. Previous studies have shown PrEP to be effective in reducing infection rates among the uninfected.

Dr. Kevin Fenton, director of the CDC's national Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, called the news a milestone. "It is clear we are not going to find one magic pill to solve the issue of HIV but by combining this approach with others we are beginning to get a better handle on combination packages. There is reason to be excited."

The news comes at the same time a second study looking at PrEP in heterosexual couples in Kenya and Uganda also found significant reductions in infection rates. The Partners PrEP study participants took either TDF/FTC, the drug tenofovir–brand name Viread, or a placebo. Preliminary results showed both treatments significantly reduced transmission in couples where one partner was already infected with the virus. Patients who took tenofovir had 62% fewer infections while those taking the combination drug had 73% fewer infections than those who got the placebo.

"Just a few years ago the tool kit for HIV prevention was not very large," says Dr. Jared Baeten,  the principal investigator of the Partners PrEP study at the University of Washington. "Now we have a nice collection of really powerful strategies that work for the population at greatest risk in the world. This is really a game changer."

"We now have findings from two studies showing that PrEP can work for heterosexuals, the population hardest hit by HIV worldwide," Fenton said. "Taken together, these studies provide strong evidence the power of this prevention strategy."

In fact, an interim review of the Partners data on effectiveness was so compelling that the trial was stopped early and the placebo arm was discontinued. Clear evidence Baeten said, that PrEP substantially reduces infection risk. At the same time he says, there was no evidence of safety concerns. Patients taking the placebo will be put on one of the drugs.

In the TDF2 study those taking the drug reported nausea, vomiting and dizziness.

An earlier PrEP trial, the iPrEx study, looked at treatment in men who have sex with men. Infection rates dropped by 90% in patients who consistently used PrEP.

“We are in a critical moment in HIV prevention research,” said Robert Grant, M.D., M.P.H, of the Gladstone Institutes and the University of California at San Francisco. He is the iPrEx protocol chair. “iPrEx provided the first proof of an important new method of HIV prevention that can help slow the global toll of 2.6 million new HIV infections each year. Partners PrEP and the TDF2 study have now expanded that finding by demonstrating the effectiveness of PrEP in heterosexual women and men.

"Developing and deploying proven HIV prevention methods – including PrEP, microbicides, vaginal gels, clean needles, medical male circumcision, early treatment, counseling, testing, condoms and suppressive therapy for pregnant women will all be key to slowing the global epidemic," he said.

The CDC says the next step is to fully review all the data and begin to develop guidelines for the use of these drugs in heterosexual men and women here in the U.S.

Men more likely to die of cancer

Men more likely to die of cancer
By Matt McMillen
Men are more likely than women to get and die of cancer, according to an analysis of 36 different types of tumors and blood cancers that affect both sexes.

Leukemia and cancers of the colon and rectum, pancreas, and liver killed about one and a half to two times as many men as women in the U.S. over a 30-year period.

In addition, lung cancer killed nearly two and a half times as many men during that time.

The American Cancer Society estimates that men have about a 1 in 2 chance of developing cancer at some point in their lives, compared with women, who have a 1 in 3 chance.

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It's not clear why there is a disparity, but it may be due in part to lifestyle factors such as more smoking and drinking and fewer doctors' visits or cancer screenings among men, says Mikkael Sekeres, M.D., a cancer epidemiologist at the Cleveland Clinic's Taussig Cancer Institute, who was not involved in the study.

"Some cancers are unavoidable because of factors like genetic predisposition," he says. "But where there are things that we can control, we should do our best to do so."

In general, women have earlier-stage cancers at diagnosis, though this isn't true for all types of cancer. This may be because women are more likely to get symptoms checked out.

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"The take-home point from this article is: Guys, don't blow off symptoms or screenings, and adopt healthy lifestyles," says Dr. Sekeres.

Michael B. Cook, Ph.D., the lead study author, agrees that men's greater exposure to risk factors such as smoking and drinking may explain some -- but not all -- of the difference.

For example, men may be exposed to more carcinogens, have hormonal or metabolism differences, or get less protection from antioxidants than women, he says.

"If we can identify modifiable causes of sex difference in cancer incidence and mortality, then preventive actions could reduce the cancer burden in both men and women," Cook says.

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The report was published this week in the journal Cancer Epidemiology, Biomarkers & Prevention. In the study, Cook and colleagues at the National Cancer Institute analyzed federal mortality data from 1977 to 2006, including 36 different cancers that are diagnosed in both women and men.

They found that men were more likely than women to die of most cancers and this was largely because their cancer was more likely to be diagnosed in the first place. After diagnosis, however, the cancer-related survival rates for men and women tended to be about the same. However, men with some types of cancer were more likely to die of the disease than women with the same type.

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Lip and throat cancers killed about five men for every woman who died of the diseases. Four times as many men died of esophageal cancer as women and urinary bladder cancers killed more than three times as many.

However, women are narrowing the gap with men for some types of cancer, such as lung cancer. Lung cancer cases decreased among men during the study period, but were stable or increased in women.

According to the Centers for Disease Control and Prevention, 88,329 men died of lung cancer in 2007 -- the most recent year for which data are available -- compared with 70,354 women.

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Age apparently played no role in the differences in death rates.

"This study confirms what we have been seeing," says Sekeres. "If you look at the cancers with the highest mortality ratio rates, you see that they are head and neck cancers, bladder cancers, lung cancers. These are all related to lifestyle."

Scientists Discover Drug-Resistant Gonorrhea 'Superbug'

Scientists Discover Drug-Resistant Gonorrhea 'Superbug'
By LAURA BLUE
A new, untreatable strain of the sexually transmitted disease gonorrhea has been discovered in Japan, according to an international team of infectious disease experts. The strain, named H041, is resistant to all known forms of antibiotics.

The finding was presented Monday with extensive laboratory evidence at a conference in Quebec City, Canada — and it comes just three days after the Centers for Disease Control and Prevention (CDC) warned that U.S. gonorrhea samples had being showing new signs of drug resistance as well. Although drugs have remained effective in almost all U.S. cases, the CDC said that analysis of bacteria samples taken from 2000 to 2010 showed that the gonorrhea bug was becoming less and less susceptible to the frontline drugs, cephalosporins, as the years went by.

"This is both an alarming and a predictable discovery," Dr. Magnus Unemo said in a statement about H041. Unemo, based at the Swedish Reference Laboratory for Pathogenic Neisseria, worked with Japanese colleagues to characterize the new H041 multidrug-resistant gonorrhea strain.

Multidrug resistance is "predictable," in Unemo's words, because most gonorrhea strains worldwide are already resistant to at least one major class of antibiotics. Bacteria become resistant to antibiotics through evolution. Some naturally occurring genetic variation exists among Neisseria gonorrhoeae, the bacterial organism that causes gonorrhea, and that means that any one given bacterium may, by chance, be slightly more susceptible to antibiotics than another. When a colony of bacteria first comes in contact with antibiotics, therefore, the antibiotics will kill off the most susceptible bacteria at higher rates. This leaves behind a disproportionately robust batch of surviving bacteria, and when the survivors reproduce, they pass on their more-robust-than-average genes to their offspring. With repeated exposure to antibiotics, and over many generations of bacteria, eventually all the bacteria that are spreading are drug-resistant.

In the U.S., gonorrhea strains resistant to penicillin and tetracycline have been circulating since the 1970s and became widespread by the early 1980s, according to the CDC. Since then, most Neisseria gonorrhoeae have also become resistant to fluoroquinolines, and today the CDC recommends treating gonorrhea with both a cephalosporin and either azithromycin or doxycycline (two relatively commonly administered antibiotics).

But the recent CDC report from last week suggests that some U.S. samples of Neisseria gonorrhoeae are no longer responding quite as well as they used to against cephalosporins either — the bacteria have become less susceptible — and now the new strain in Japan is reportedly resistant to everything.

That brings us back to what researcher Magnus Unemo called "alarming." Gonorrhea is by no means the most deadly of sexually transmitted infections. But it is among the most common — with 700,000 new cases in the U.S. each year, and an estimated 340 million new cases each year globally.

The disease often causes painful intercourse (among women), tender and swollen testicles (among men), and pain when urinating (among infected people of both sexes). Left untreated, gonorrhea can lead to internal scarring of parts of the reproductive tract and, in women, pelvic inflammatory disease or lifelong infertility.

"The potential emergence of gonococcal cephalosporin resistance is of particular concern because the U.S. gonorrhea control strategy relies upon effective antibiotic therapy," the CDC announced Friday. "No other well-studied and effective antibiotic treatment options or combinations currently are available [once the bacteria are resistant to cephalosporins]."

As for H041, the strain found in Japan: "While it is still too early to assess if this new strain has become widespread, the history of newly emergent resistance in the bacterium suggests that it may spread rapidly unless new drugs and effective treatment programs are developed," Unemo said in his statement.

Indeed, when researchers grew the drug-resistant bacterium in culture with other strains of gonorrhea, the new strain was able to pass its resistance quickly, increasing the other strains' resistance to cephalosporins some 500-fold. That suggests that H041 could spread resistance swiftly in the real world.

 

Hair loss: Exhausting, agonizing

An agonizing secret: One woman's story of loss

Editor's note: Lisa O’Neill Hill is the co-owner of a writing, editing and consulting business in Southern California.
My long, thick red hair - the thing I liked most about my looks - began to fall out 5 years ago, when I was 37. I’d perpetually pick hair off my arms, my back, my car seat, my bathroom counter. My shower drain clogged easily. Running the vacuum meant enduring the smell of burning hair.

At first I thought the shedding was temporary and must be connected to a medical problem. I consulted eight doctors, endured dozens of blood tests and spent thousands of dollars. I secretly hoped I had a thyroid problem, a hormone imbalance, some kind of vitamin deficiency, even lupus. I needed an explanation. But all the tests came back negative.

A few years ago, I flew from California to New York to see an endocrinologist who specializes in female hair loss. He diagnosed me with genetic hair loss and prescribed a daily regimen of several medications, including Propecia, a hair loss drug that is only FDA-approved for men.

That doctor gave me hope, but that hope has long since faded. Although his regimen has worked for many, it didn’t for me. I suspect nothing will.

After exhausting my options, I’ve had to face the truth: nothing is going to stop my hair from falling. My father and brother have varying degrees of hair loss and my mother always had fine hair. My maternal aunt had very little hair on the top of her head, classic female pattern baldness.

I’ve never been thrilled with my appearance, but my hair was the one thing I was frequently complimented on. It was an integral part of my identity. When my hair began to shed, my already fragile self-esteem broke apart. I felt ugly, ashamed.

Watching my hair abandon me put me in a dark place. I went to therapy for a year and began taking antidepressants. I was in crisis. Those around me, even though they were there for me, didn’t quite understand why this was affecting me so brutally. I’d sob in my husband’s arms and talk about my hair constantly and obsessively.

My hair was the last thing I’d think about before I went to sleep. And it was the first thing on my mind when I woke up.

For a long time, my sanity was held together by a group of strangers, women across the country and around the world who, like me, are struggling to conceal their hair loss and handle the deep emotional toll it takes.

We met on the Women’s Hair Loss Project, an online support network where we traded information about treatment options, coping mechanisms, hair pieces, the numbers of hairs that fall out (yes, some of us count) and where we lauded considerate doctors and condemned dismissive ones.

Our stories had commonalities: Losing our hair made us feel unattractive, unworthy, less womanly. It robbed us of joy. We withdrew. “I want to die,” one woman wrote. In public, we studied other women, envious of the hair that they take for granted.

I had that hair once. I marvel at old photos. At the time, I didn’t realize or appreciate how much hair I actually had.

I do what I can to hide what is happening. I had my hair cut shorter to make it appear thicker. I part it a certain way. My hairdresser styles my hair frequently, blowing it out with a big brush. I am beyond grateful to her.

Still, I worry about others noticing my hair loss, about what my head will look like tomorrow, next week, next year. When I commit to a social engagement months away, one of the first things I think about is what my hair will look like by then.

For a long time, I’ve kept my secret close to me. But it’s been exhausting. I may not be at the point of my hair loss being that noticeable, but I know one day it will be. What then? I am afraid it will send me back into that dark place.

For women with genetic hair loss, the options are limited. We can use Rogaine (which works on some people but only for as long as it is applied), take medications that will suppress our levels of testosterone and increase our levels of estrogen, or look for something cosmetic like a hair piece. We are desperate for a solution.

I’ve lost faith in the medical establishment. I’ve been dismissed by cavalier doctors who undoubtedly looked at my head of hair and thought I was crazy. Everyone loses hair, they said. That’s true. But for most people, that hair grows back. I knew all along that my situation was different; my follicles were dead. I just wish I hadn’t been right.

I’m grateful I don’t have cancer or some other life-threatening illness. Yet this has cut me to the core. My 7-year-old daughter knows not to touch Mommy’s “delicate” hair and asks why I frequently wear baseball caps.

At the grocery store, at church, at the mall, I notice other women with genetic hair loss. We are a sorority of suffering sisters.

My hair is still falling out. In fact, lately it seems to have increased. It still makes me sad, but I know I have done everything in my power to remedy it. It’s time to stop fighting and to accept the cards I have been dealt.

I know I’m making progress. I have transitioned from hysteria to detachment. I no longer cry about my hair loss. I am loath to give this any more power. This is part of who I am. I shouldn’t be ashamed, but somehow what is happening makes me feel less than the person I used to be.

I am more than my hair. At least that’s what I constantly try to tell myself.