Wednesday, September 12, 2012

My goodness, I can't believe it's been so long since my last post! Much has happened in the past few weeks, and hopefully I will become a stronger woman from them.

Life brings along many hardships, as we all know. And I have always been proud to say that of all the obstacles I have worked to overcome, my hair loss is one that I think of less and less. Every person will face challenges, and if you are reading this blog I presume that either you or a loved one will have to face the challenge of losing your hair.

A few years ago I used the phrase, "it's just hair" or "I'd rather lose my hair than have ____," (you get the point). And while I continually focus my references in a general direction, so as not to offend someone, today I stand by those statements.

My mother has been diagnosed with cancer, and it has already begun to spread. My father is mentally disabled and unable to work or drive as a result. And I have a portfolio full of conditions that makes me afraid to walk or run alone, just in case I pass out. Admittedly, these last two sentences may seem minor in the grand scheme of things, but this is proof to me that my hair loss falls short in the book of my worries.

So, for those of you who have said, "Yes, I might be bald but at least I'm not _____," or ".... at least I am alive and healthy," -- good for you! Don't apologize for that. That is your own journey, and your own way of viewing your hair loss. I commend you for your optimism; please don't ever change it!

And for those of you who have hair loss at the top of your list of worries, please know that that is okay, too! We all have our own stresses- our own mountains to climb.

But, if this it at the top of your list, I encourage you today to take a moment and find the good in what you have been given to deal with. Find a moment today to be grateful that if you do have Alopecia, like me, that it isn't life threatening. It may be life-changing.... It may totally suck sometimes.... but it isn't __(fill in the blank)  .

Before I run, I want you to know that this is not meant to make you feel bad for any struggle you may have with your hair loss. We all struggle. I struggle with different things every day. All I ask is that as a group, in honor of Alopecia (aka Baldie) Month, you take a moment to find gratitude for the fact that we are alive, that a cure is on it's way, and that we have each other for support!

Many blessings,

Kayla

Monday, August 6, 2012

Back to School

As much as I don't want to say it... the summer is almost over, and school is nearly back in session.


I received an email and related posts on the Facebook group asking for tips for teens heading back to school with changes in their hair loss. Some are heading back with less hair, some with more hair! And as a teenager, it can be overwhelming to anticipate the reactions of your classmates with any kind of change- especially one that sparks sensitivity.

I've always worked under the belief that full disclosure gets you further when it comes to your hair loss. Typically people are more understanding and empathetic when they are given a full introduction to change. Let's be honest... teens are nosey. They want to know what is going on with everyone. So, you can choose to either put it all out there, so there is nothing left for them to question and rumor-spread. Or, you can let them assume what they want and not let their whispers bother you.

You need to question yourself and ponder what approach you feel most comfortable taking.

I know I have friends out there heading back to school with a brand new wig! How exciting!!! Change is always fun, and hopefully your new hair is helping you to feel all the more feminine, confident and beautiful! Let's be real with each other- if you've been attending the same school for eight years and spent the last four bald, some people are going to notice that you now have long blonde hair. But, that isn't such a bad thing! You might want to let your peers assume your hair grew back, a move on with your life without publicly acknowledging your Alopecia. That is totally fine!

Don't forget that plenty of your peers are going to come back to school looking and acting differently! Some will have new clothes, new hair styles, new friends, new relationships and beyond.

So let's consider your other options! You might want to open up to your classmates, and clue them in on the change so that there isn't an elephant in the room for the rest of the year. If that's the case- how do you approach it? When do you tell them? And how on earth do you drop a huge bomb like that on people you haven't seen all summer??? Don't worry!!! That's why we all have each other- so we can share what has and hasn't worked for us. I can share my own stories, and make suggestions, but ultimately the choice is yours! Talk it over with your biggest supporters- your friends and family. They know you best, and they are familiar with what works for you.

Should you choose the full disclosure route, I say there is no better time than the present to get the ball rolling. Don't build this "coming out" to be an earth shattering event- we've all had to do it. I remember when I told the Miss Delaware judges I was wearing a wig, or when I took my wig off at a high school graduation while I was speaking, or when I told a new employer about my hair loss. And here I am today, a champion of all that!

Why not share a fun email to your best friends pre-semester and show off your new look. Let them know what has changed, but also, what you've been up to all summer! Tell them you can't wait to see what this year has in store and that you are so thankful to have the greatest friends on the planet!

You could also wait until school starts and on the first day back share with your newest and/or closest friends what is going on. Basically, I would say, "So, a lot has changed since last year. I now have an autoimmune condition called Alopecia Areata/Totalis/Universalis. Basically it just means my hair falls out as if my body is allergic to it. Don't worry- it isn't contagious! And, thankfully, I have no other symptoms! So... what are you thinking?"

You could also introduce the wig, if you are now wearing one. "So much has changed since last year! Obviously, I have a new du! My hair started falling out in ____ and I decided to try something new!  I have Alopecia Areata/Totalis/Universalis which is an autoimmune condition that causes my hair to fall out. But, don't worry! It isn't contagious, and I am going to be just fine! So, what do you think?"

Next, you should decide if you would like your teacher to introduce your Alopecia to your classmates, or if you would prefer to take care of it on your own, OR let nature take its course. Again, talk with your parents and get a family-game-plan. Your teachers just want to help, and naturally, they are going to worry about you. I suggest you at least let your parents write a letter to your school nurse, and your teachers to let them know of the changes in your condition or introduce it to them. The more informed they are, the more helpful they can be for you!

If you have any specific questions, or would like some opinions on how to approach this- feel free to send me a direct Facebook message or post on the Kayla's Corner Facebook Group! We are all here to support each other and many of us have been in your shoes!

Tweet your questions or suggestions to @MissDelaware10! I can't wait to hear from you!


Wednesday, July 25, 2012

Upcoming Event- Alopeciapalooza 2012!!!

Hi everyone!

This month has just been a whirlwind with lots of traveling and a minor summer flu! Kevin and I are leaving for our honeymoon in just a few hours to celebrate our new chapter with a week away!

Since I was unable to attend the National Alopecia Areata Foundation's Conference this year- which happened to be in my neck of the woods- I surely cannot miss my other favorite summer Alopecia event!! Alopeciapalooza 2012 is going to be hitting North Carolina in just two weeks!!! The Children's Alopecia Project hosts this uniquely awesome camp where tons of kids get to hang out for the week and, you'll never believe it... SURF!!! Yep, that's right. These beautiful baldies are going to be hitting the waves (or whatever the appropriate term is!) and making some moves in the water. :) The kids aren't the only ones who will be surfing... The other speakers and I have somehow been convinced to board up and learn to surf right along with the kids.

Now, I'm not sure how this is going to go.. But I can't wait to find out. Learning to surf is on my bucket list, so North Topsail Beach... here I come!

During our time at Alopeciapalooza kids and families alike can hear speakers such as Amanda Altice, Margaret Baker, Laura Carr Hudson, Dr. Patricia Tager, Georgia Van Cuylenberg and many more! Some of the topics include a discussion on treatment options and research directly from a dermatologist, raising your child to be as self-confident as can be, and how to spot a bully. I'll also be speaking based upon the topic, "Finding the Normal in Alopecia: What Makes Me, Me".

Clearly, there is a lot in store for the week! But, that's not it... Kids will be fishing, touring a turtle sanctuary, paddleboarding, playing in a family volleyball game, enjoying a big bonfire and bocce all and, of course, surfing!!!

Best of all, kids with Alopecia get to be surrounded by a group of fellow baldies who can all relate to each other. What could be better?

If you are interested in learning more about the Children's Alopecia Project, who hosts Alopeciapalooza- or in attending next year- visit www.children'salopeciaproject.org

So who will I be seeing in North Carolina?? Visit Kayla's Corner on Facebook and let me know!

I'm off to get my base tan before this terrific camp, so I'll see you all there! Have a great week, and special thank-you to CAP Founders, Jeff and Betsy Woytovich (and their lovely daughters) for including me in my second Alopeciapalooza!

Be sure to follow me on twitter @MissDelaware10 for all my fun tips and questions.

Friday, July 6, 2012

Upcoming Alopecia Events!

Hey everyone!

In the coming months, there are quite a few major Alopecia Areata events you should mark on your calendars!

1. On July 14th  there will be a CAP Kid Picnic in Limerick, PA! Just come to Manderach Memorial Park, Swamp Pike and Ziegler Rd, Limerick, PA between 3-7pm! Everyone is welcome to bring a side, dessert, or drinks to contribute to the picnic. Contact  betsywoytovich@yahoo.com for more info!
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2. Annually, the National Alopecia Areata Foundation hosts a conference in a different city where tons of baldees can meet for a whole weekend of fun. People from all over the world who have Alopecia (of any kind) travel to attend the conference, meet others who can relate to them, learn about the latest research and even meet vendors who offer hair solutions or solutions to common issues.
July 19-22, 2012 NAAF will be hosting the conference in Washington, DC. Among the benefits mentioned above, attendees will also have the chance to lobby for funding for research for a cure!

If you have never attended the NAAF Conference, or haven't been in a while, I definitely suggest rearranging your schedule! Visit the link provided for further information, and see if you could rearrange your schedule to visit with me in 13 days!

3. Alopeciapalooza is an annual camp hosted by the CAP- Children's Alopecia Project! Betsy and Jeff, who run the organization, are complete sweethearts and they have a passion for making every kids camp experience as FUN as can be! They have daughters of their own, and Maddie, their middle daughter, happens to be a fellow baldie! I caught wind this morning that camp is sold out for this year! Bravo to CAP! But be sure to check back in the coming months for info on Alopeciapalooza 2013! I leave in about a month for North Carolina to attend my second CAP Camp!

4. NAAF Bowling Event in Tucson, AZ on Saturday August 4th from 12-2pm! What a fun way to meet other people with Alopecia and even introduce your kids to other kids!

5. One of my favorite events of the year is the annual Let Your Hair Down Gala to benefit the National Alopecia Areata Foundation! The event this year will definitely be one to remember! Mark your calendars for October 19th and plan to bring the whole family to New Jersey! Lilliana, her sister Isabella and I will be the stars of the evening along with some special surprise celebrity guests! Kids are welcome to come. Stay tuned for more information as we get closer!

If you are hosting an upcoming event, please share it with us on the Facebook Group, Kayla's Corner for Women & Kids with Hair Loss! I hope you are all staying cool and enjoying the gorgeous summer! After a few days without electricity during the heat wave, we are thrilled here in the DC Suburbs to have air conditioning again. I have been spending lots of time traveling lately, including in a few days in NYC, a few days in Delaware and some time teaching my modeling students at Barbizon!

See you next week!

Love,
Kayla

Tuesday, June 19, 2012

Research vs. Support

Happy Monday everyone!

Lately there has been so much chatter about the differences among organizations related to hair loss, and the varied approaches they take. Some focus specifically on Alopecia research while others focus directly on support. Which side do you stand on?

Within the Alopecia Community there are a handful of prominent organizations. Later, I will post a blog for each of the organizations to highlight them individually! The National Alopecia Areata Foundation is the most commonly known within the United States for being a source of support and research. But, the Global Alopecia Mission was created recently based upon gaps the creator has seen in NAAF's research efforts to find a cure. Then, there are organizations like the Children's Alopecia Project that primarily focuses on the support of children coping with their hair loss.

With any situation where there are several organizations working seperately to meet the needs of one community- there will be issues. Some coexist very well and even choose to support each other. I know that the Children's Alopecia Project encourages families to be involved in whatever programs meet their needs. NAAF feels the same way- if a child would like to attend the NAAF Conference and Alopeciapalooza (CAP Sponsored Children's Camp), then they should!

When it comes right down to it, the question one should answer for themselves is- which is more important to you, research for a cure or support?

Now you might be thinking- why do we have to choose? I agree! In a perfect world we could have both. Some believe they have found just that within the National Alopecia Areata Foundation. Others feel that NAAF is not putting enough funding into their research.

Would you rather an organization hold frequent fundraisers and solicit donations to faciliate legitimate research so we may better understand Alopecia Areata? Would you rather "move forward" and focus on maintaining or creating a positive outlook while meeting others who can relate to you?

Naturally, only you can answer that.

Join the conversation on the Facebook Group- Kayla's Corner for Women & Kids with Hair Loss! Or tweet your thoughts to @MissDelaware10. Be sure to follow our updates as well @hairlossdotcom

Have a great week everyone!

Friday, May 25, 2012

Catchup Session


Hello Friends!

My-oh-my, I can't believe it's been a month since my last post! I apologize for being MIA for a bit, but with final exams, last minute wedding preparations and two weddings in one month... well, let's just say I've kept busy!

There has been an outpouring of love and well wishes from all of you which warmed my heart just as the wedding came around. Thank you all so much for your sweet messages! Everything was so wonderful on Saturday and I am proud to say that I am now a wife!

I will be sure to post more pictures from our incredible photographer, Gary Nevitt Jr., as soon as they are finished.

Lilliana and I both wore hair from Gemtress on the big day, and Mario at Salon Rispoli in Newark, DE styled us to the nines! All I asked was that he be sure we looked natural and felt comfortable (and like ourselves).

All of my bridesmaids and Kevin's and my mother had their hair styled at Salon Rispoli on Saturday and Lilliana and I were able to walk around and keep everyone laughing since our hair was styled and waiting for us!
I have some great blog posts in the works, so be sure to check back again next week! I have a full, behind-the-scenes look into our wedding with the makeup and hair tricks we used. Also, we have a response to some of the negativity that has been posted online regarding the approaches to hair loss.

Again, thank you all for your love and support as Kevin and I start our new life together!

Love,

Kayla

Monday, April 16, 2012

Tape, Adhesive or none- What's your preference?

Tape...glue...nothing- what's your preference?

     When wearing a hair piece, you have several options to feel secure. Most women, who have total hair loss and choose to wear a wig, opt for a piece they can tape down. You are probably thinking, Why?
     The answer is, security. Knowing the wig is taped down means it isn't going anywhere. But, it also provides flexibility. This means you can take the wig off at the end of the day, or after a few days, and it doesn't have to be a full-on, traumatic process.
     The Gemtress Firenze (my current "signature" piece) can easily be taped down. For a woman with Alopecia Areata, tape may not be the best option, though. My hair comes and goes, so the Firenze is a great choice for me- I can tape it down when my head is smooth, but it is fitted enough that I can (and often do) go without tape!
     When it comes to tape, you can definitely shop around. Ask your wig consultant for suggestions based upon the piece you've purchased, and your lifestyle. Some women prefer "wig tape" or "toupee tape" which is ideal for someone who prefers to remove their wig every day or every other day. This is often rather inexpensive, and is less sticky. Industrial strength tape from a craft store is a valuable option for someone with a smooth head because it offers a stronger hold with longer results. It is a little more painful to remove because of the bond, but I have heard it gets less and less painful each removal! Tape is an option for you to apply and remove yourself- without a professional.
     At the Miss America Pageant, I was so terrified of my wig flying off and into Joy Behar's face during the talent competition, that I asked Mario Rispoli to "bond" the wig to my head that night. This means that he used a custom fit piece, created perfectly for the shape of my head, and covered the inner cap with a liquid bond/glue so that I felt secure. Bonding/gluing is the perfect option for someone with Alopecia Totalis/Universalis or extensive hair loss that leaves your head smooth for periods of time. It is not ideal for a woman with Alopecia Areata or frequent regrowth. The reason being when the wig is ready to be removed it will be a much more painful process if it could potentially pull out new hair. Plus, new hair can loosen the bond.
     Bonding can last up to a few weeks depending on your level of activity. If you shower frequently and don't use a shower cap, the water can loosen the bond. If you exercise daily and sweat heavily, the perspiration will loosen the bond as well. I suggest using a shower cap and washing the hair every couple of days. Use as little product as possible in order to lessen the need for washing. And when exercising, consider using a sweat band right around the hairline of the wig to absorb as much sweat as possible. As long as the hair is human, you will be able to live just like the hair is your own! Sleep in your wig, wake up with it and so on!
      For those who wish to have complete flexibility- the ability to throw on and off your wig/s as you please- tape and bonding are not for you. I appreciate the moment when I get home after a long and exhausting day, and I throw my wig on the kitchen table. I appreciate leaving my wig on the passenger seat of my car before I enter the gym to workout. Tape and bonding are not a part of my everyday life. But, I love knowing that I have the choice!
      The Firenze, and all of the other pieces in the Gemtress line, fit my head well enough to not need tape or glue. And if they become stretched over time, Mario darts them and sews them to fit just like they did on day one- prolonging the span of the wigs life.
      However, if you opt for a bonding of some sort, you should know the best way to remove it! When the time comes to take it off, you can either revisit the salon and have it removed there. Or, you can use 100% rubbing alcohol and a q-tip as you gently rub along the hairline to remove the bond- pain-free!
     So, in your life, what do you prefer? What have you tried? Join the conversation and share your experiences on the Facebook Group, Kayla's Corner for Women and Kids with Hair Loss! Have a great week, and enjoy the beautiful weather!