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!

Monday, April 9, 2012

Guest Blog: Melissa's Story

Hey everyone,

Below you will find the story of my friend, Melissa, who also has Alopecia. Her experiences are different than mine, which is why I thought they were perfect to share! Best of all, she has her eyebrows tattooed, which has been a hot topic lately that I have no experience with! She was kind enough to be so open, and has said she will answer any questions you may have on the Kayla's Corner Facebook Page! Just be sure to tag @Melissa Palmieri!

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 Melissa- Living with Alopecia

When I was in the sixth grade I noticed that I didn’t have any eyelashes. I didn’t think much about it at the time because I didn’t know any better if it was normal or not to not have them. By my freshman year in high school my eyelashes had grown back. One day during tennis practice I had pulled my hair back and my friend asked me why I had a bald spot, I said “I have no idea”. That night I went home and showed my mom. She then scheduled a doctor’s appointment at a well-known dermatologist in New York where I got diagnosed with Alopecia Areata. The doctor prescribed me Protopic cream that I applied twice a day to the bald spot. It grew back within a couple of months. I went 7 years without my Alopecia acting up. It wasn’t until January of 2011 when my Alopecia was triggered from Lymes Disease. I had completely lost all of my hair by the summer time including eyebrows and eyelashes as well.

I now have had Alopecia Universalis for over a year. Since last March I have invested in a ton of wigs; both synthetic and human hair. I purchased my human hair wigs from Hair in a Pinch located in Edison, New Jersey. I have nothing but great reviews for them. They provide one-on-one assistance to help you find the perfect wig for you. They also do wig alterations so that your wig is the perfect fit for whatever size and shape head you may have. I also have synthetic wigs as well which are great to have because some are heat friendly and are very affordable. I buy all of my synthetic wigs from a cosmetic store called Merle Norman. Again, another great place especially if you are looking for something more affordable because human hair wigs tend to be more expensive.

I recently just got my eyebrows tattooed since I do not have any eyebrows as well. Prior to tattooing my eyebrows I was using temporary eyebrow tattoos that I would purchase online from Headcovers.com, however putting them on everyday got tiresome after a year because they would only last for the day. While I was getting my nails done at Christie’s Nails; a local nail salon located in Manayunk (a small town in Philadelphia) she noticed how I didn’t have any eyebrows and told me how she tattoos eyebrows, eyeliner, lip-liner etc. She showed me pictures of prior clients she tattooed which all looked amazing. Christie, who is the owner of the nail salon and who tattooed my eyebrows discussed different shapes that would look well and then once we decided she then drew outlines of them with lip liner and then proceeded to tattoo them. To draw the outline of the eyebrows took about 30-45 minutes. Since they are permanent she wanted to make sure they were even and perfect. The tattooing then took about an hour and a half to 2 hours. I have to say it didn’t hurt for the first hour but after a while since I have sensitive skin it did start to burn because my skin was irritated. It was $350 which includes the first touch up as well which you get anywhere from 4-8 weeks after you first get them done. The healing process is just like any regular tattoo where they will scab after a few days and peel. After the first touch up they can last several years until another touch up is needed. I highly recommend Christie if you are interested in the tattooing route. I couldn’t be happier with my eyebrows. It is so nice to wake up in the mornings and not have to put them on everyday now. Above are pictures of myself with my tattooed eyebrows. I will post an updated picture once I get my first touch up so everyone can see the true color that they will be.

            I never thought how hard it could be to not have any hair and how something so little such as your eyebrows and eyelashes could make such a difference in appearance. Each day that has gone by has gotten easier for me. Without the support and dedication from my amazing family, friends, and boyfriend I wouldn’t be as confident as I am today.
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I love how much we actually have in common! Don't forget to visit the group Facebook page and post any questions you have for Melissa. She is the sweetest person with such a terrific outlook!

See you next week!
-Kayla

Tuesday, April 3, 2012

Does money play a factor in how you cope?

Hey everyone!

We've talked quite a lot about wigs, and their role in the way we all handle our hair loss. And we have talked about the different types of wigs and hair replacement options available. We've briefly noted the variety in treatments as well. But, rarely have we discussed the investment in each of these.

When I was younger, I chose to try cortisol injections for approximately six months. My mother researched to see if our medical insurance would provide any coverage for the treatments...
Our family has always been very financially conscious, and naturally the finances would play a role in whether or not I choose to try something new that isn't proven to help.

Thankfully, my mother researched and discovered that our medical insurance provided minimal coverage of the cortisol injections- so I though I should give them a try!

After quite a few rounds of treatment, and seeing quite a bit of growth- I knew we had made the right choice to try something new! But, when I ceased my treatment routine, the new hair fell out. It was then I knew that I didn't want to put forth the money constantly to go through that pain for the rest of my life.

And when I started searching for wigs, money was my second largest concern. First, was that the way look and feel natural- otherwise it wasn't worth any amount of money to me. Budget was such a large stressor that not only did my parents, friends, fiance', and in-laws-to-be chip in... But so did many of my Miss Delaware supporters like my local director/mentor, Laura Mattey (who introduced me to Mario!). It was quite a communal effort. Without so much support, I would not have been able to afford such a beautiful hair piece. But my experience is proof that anything is possible!

Every route of coping with your hair loss may involve money. Whether you choose to wear a wig, wear false eyelashes, seek medical treatment or homeopathic treatment, or even flying to a national conference to attend support groups and  informational sessions- all involve a financial commitment. Some more than others, of course- but, money nonetheless.

How does money play a role in the way you (and your loved ones) cope with your hair loss? Do you stray away from the more expensive options like Custom Fit European Hair Wigs? Do you jump at any opportunity that is within your budget- like fad diet changes, natural vitamins or boxed synthethic wigs?

Does money deter you from coping the way you would have hoped? Or do your finances help you by showing you there are always new doors to be opened?

I would love to hear what you think! Please join the Facebook Group- Kayla's Corner for Women & Kids with Hair Loss
or tweet your thoughts to @MissDelaware10

Sending love and best wishes to you!
-Kayla

How has money played a role in the way you cope with your hair loss?