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Posts from the ‘Ichthyosis Support’ Category

Awareness Begins at Home #IchthyosisAwarenessMonth

For Ichthyosis Awareness Month (IAM), we are delighted to be sharing an insightful post from our “Guest Dad Blogger” and long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with Epidermolytic Ichthyosis (formerly known as EHK). In this post, Mark shares his thoughts on deciding where and when ichthyosis awareness raising might have the most far-reaching impact.

Awareness Begins At Home #IchthyosisAwarenessMonth

Ichthyosis Awareness Month is now upon us.   If you didn’t know that, you’re not connected to FIRST in enough ways!    Many people struggle with what to do during this time.   How do I raise awareness?   Do I need to raise awareness?   The answers are “simply,” and “yes.”   But don’t worry, I’m not here to preach to anyone about what they “must” do.

I’m sure everyone would agree, ichthyosis is a very personal thing.  For many, they like it to even be a private family matter.   I get that.  And far be it from me to tell anyone how to live their life.   Like everything else ichthyosis-related, skin care, fundraising, etc., awareness is something you need to do in your own way, and at your own speed.  Also, in my opinion, awareness begins at home and with those closest to your family and community.  They are the ones who have the most interest in trying to understand, and perhaps educate others.

However, before you can educate someone else, you have to first understand what you’re dealing with.   Could you go out there to anyone and simply say “it’s a genetic skin condition,”  or, “my body doesn’t shed skin as quickly as it should,” or, “my body over-produces skin cells?”   Of course you could.  But would you really convey to someone what ichthyosis really is all about?  Would they have empathy for you or your child’s situation?   Would they be compelled to help another person understand ichthyosis, or perhaps support FIRST with a donation?   The answer is, likely, no.

Ichthyosis is complicateIAM_Logo_WebAddressd — period.   I’ve spent the last 13 years continuously trying to learn about and understand my son’s EHK –taking the science of it and converting it into an analogy or example that any nonmedical person can understand.   Only recently have I begun to feel like I’m at the point where I can give someone that clear understanding of what causes his skin to look and behaves like it does; what the complications in his life are because of ichthyosis. And, after over a decade of practice, I can do it in 2 minutes or less! Don’t worry, you’ll get there.

Once you feel you understand the condition, and can clearly communicate it, start with other family members, and your closest of friends.   These are the people you or your children will come in contact with more than anyone else.  Their level of understanding and “awareness” are critical. Again, this is where awareness begins, at home.

Once you’ve accomplished that, you’re ready to go tackle the world — should you choose to.   Perhaps try and schedule some time at your child’s school to go in and talk to his/her science class.   Maybe you can post an ichthyosis “fun fact” every day on social media.  Perhaps write a brief story/article for your neighborhood, church, or school newsletter.  Or maybe even you go BIG and contact the local media to see if anyone will publish a story on ichthyosis, and your family.   Whatever you choose, it has to be what you’re comfortable doing. That’s when self-advocacy truly resonates with others, and unquestionably makes a difference.

Happy Ichthyosis Awareness Month!


When to Know When They’ve had Enough Heat!

Today we turn to long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with Epidermolytic Ichthyosis (formerly known as EHK). Mark has been an active participant in FIRST activities and a frequent contributor to our FIRST for Parents Group on Facebook. His input as a mentor to other fathers and affected families has been invaluable. Just this past week Mark, once again, gave thoughtful insight into when and how to recognize the signs of overheating.  With the summer months quickly approaching, we thought it was an important message to share with our broader audience. Here is Mark’s input into a conversation regarding temperature monitors and recognizing your child’s signs of overheating:

“I would advise caution on the temperature monitors. My fear is that you will be lulled into a false sense of security. Generally kids with ichthyosis will be over heated long before you’d see a noticeable change in the actual body temp. Think about it this way. When you’re hot, you perspire. That’s the body’s way of regulating temp. Correct? It’s no different with your child or mine. The problem is that the moisture generally gets trapped under the thickened or scaly skin and doesn’t really evaporate, making them actually hotter, not cooler.

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

Adam Klafter, 2014 National Family Conference-Indianapolis. Photo Courtesy of Positive Exposure

My advice would be to watch your kids closely when the weather is warmer. Each will have their own tell-tale signs. Some kids get really red cheeks. Some will start scratching their head more. It can be a variety of things. Eventually you’ll learn what to look for in your own child. And with younger children, who likely aren’t going to say anything until it can be too late, you need to teach them to recognize signs in themselves. And as always, for newer parents, I recommend being in the warm sun in small doses to start out, so you can see how they handle it. Maybe five minutes outside, five minutes inside, then graduate to 10 outside, 10 inside, etc. You’ll learn fairly quickly what they can tolerate, as well as what the warning signs of overheating are for your child. Just my two-cents.”- Mark Klafter

Stay tuned for more “pearls of wisdom” from Mark Klafter, as he will be contributing more insightful posts as the first “Guest Dad blogger” for FIRST!

More information on ichthyosis and overheating.

If you’d like to join the conversation on our FaceBook groups, log onto to: FB Parents, FB Young Adults, FBAdults, or FB Teens and ask to join. A FIRST staff member will promptly reply.

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!



Meet FIRST Member, Kenny Krips

 “I am no longer stuck…”

As life would have it, after a few failed attempts to connect during a very busy fall, we finally had the pleasure to meet with member Kenny Krips in Philadelphia this past October. Over the summer, Kenny had contacted the FIRST office to check in, say hello, and inform us of one important detail, “It was time to tell his story.”

We think it’s important to share it!

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its  treatment. His childhood, once depicted in a documentary entitled “Kenny”, was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age.

However, to his good fortune, Kenny was surrounded by the love of a supportive older brother, and a mother to whom he gives a world of credit for his upbringing.  “Raising a child with a rare condition that no one has ever heard of, virtually on her own, my mom never once let on that she was anything less than strong and confident,” he said. And, she taught him one of the most valuable lessons of all: Do not pity yourself. Respect yourself, and always present well.

And present well he does. Although Kenny admitted over the years he has experienced dark periods of frustration and low self-esteem, he now feels his life experience, including his ichthyosis, has brought him to a place of acceptance, with a good dose of wisdom.   He is a friendly, well-spoken gentleman, with a new perspective on life, and an enviable passion for his work.

“In a way, I am blessed to be around trauma,” Kenny proclaimed.

Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit at Cooper University Hospital, he has ample opportunity to connect with people in a very deep and meaningful way.

“This woman came into the trauma unit because she had been in a car accident. She had Alzheimer’s and was very confused and agitated. I sat next to her and just rubbed her foot. She did not ask what happened to me (lifting his hands up to show that they are very affected), she just sat, looked me in the eyes, and listened. And then she started to calm down. She seemed to really be affected by what I was saying,” he said, further explaining why his job is so fulfilling.  “The other day a man in the trauma unit stopped me and said, ‘thank you so very much.’ For what?, I asked. ‘You asked me if I was ok and let me know you were here to help me and that made all the difference.’ It really made me feel good.”

Kenny credits his job as being a major influence for his newly found perspective. “There are so many parts of my job that make me feel good about being alive. And as my mom always said, “If you help one person in 44 years, you did your job.”

He has also come to terms with the notion that “everyone suffers” in one way or another. “I do still get frustrated, sometimes. Like when I want to wear black or be outside on hot day. But everyone struggles with something once in a while…finances, career, health issues. Everyone faces the fear of the unknown,” he said as he explained that this realization has left very little room to feel sorry for himself. “I am lucky that I have a strong family unit, a job I love, and amazing friends.”

With regard to how he now handles adverse reactions to his condition, Kenny adds, “I would rather have people acknowledge the “difference,” then just stare or ignore. But if they do stare, or make a face, I just have to pardon them. Life is too good to worry about it.”

When asked how his life would change if he suddenly did not have ichthyosis, Kenny joked, “Well, I’d never be out of a speedo!”  But then he added, “I am absolutely okay with who I am. I am not mad at who I am anymore, no longer stuck. I feel good about what I do and I want to continue to do that. I don’t want to stop. I think the man upstairs has it all mapped out for me. Whatever time I do have here, I want to make the best of it…ichthyosis or no ichthyosis.”

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!

 


Life After the FIRST National Family Conference…

 

Meet FIRST Member, Anke Fronz

It’s been nearly 5 months since the family conference! But by all accounts, the special connections and life transformations are still going strong.   Recently we caught up with Anke Fronz,  and she was delighted to share how she has discovered a more confident, “fearless” self, since meeting others, for the very first time, with ichthyosis.

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My name is Anke and I have ARCI Congenital Ichthyosiform Erythroderma (CIE). After several years, I finally took Dr. Amy Paller’s advice and signed up for the FIRST conference this past June. It was a tricky decision but deep inside, I knew this would be life changing.

I remember Peanut (my wonderful dog) and I driving to the conference. It was an interesting drive with lots of rain and some sun – not to mention, my accompanying bundle of nerves, and all of the self-talk! Recently, I was asked to write about my experience at the conference, but truth be told, I do not even now where to start. I went in as an insecure person-nervous and lacking in self-confidence, yet, somehow, still ready to go. I set the intention that I would meet people, not hang out in my room, smile a lot and, of course, deepen my knowledge about dealing with ichthyosis.

Once we arrived, Peanut, my faithful travel companion, was more than happy to go for walks and meet everyone he saw at the hotel. Deep inside, I feel he made it his goal to get me out of my shyness and have fun.

Well, it worked! I  felt quite differently on the days leading up to our arrival at the conference, than when I left. I met so many wonderful people and made some very good connections. I know that I will keep them from here on out and I cherish all the hugs, smiles and conversations over that weekend. It was so nice to meet people that were like me, and we had so many things in common. Plus, I met a lot of people that lived nearby and that was really nice to know.

For 42 years, I had a feeling that people with ichthyosis were out there, but I always felt alone. I guess because I never really met anyone with ichthyosis. Now, I am not afraid and I know that even though I may not see the friends I made or the people I met on a daily basis, there is this special wonderful group that I am part of and it makes me feel stronger. And, of course, thanks to Peanut, I met more people that I ever thought I would have on our first night at the hotel. It was wonderful and every part of me, inside and out, was smiling and beaming with happiness. Peanut was looking out after his mom for sure.

It was not only amazing to meet new people, but it was wonderful learning about how they handle their skin, and life in general.   When I was talking or listening to conversations about family support, or at what age they started putting lotion on themselves etc., it was at those moments, I thought about my family, especially my mom. She passed away in 2004 and she was my biggest supporter. She never made me feel different or let me get down on myself. Although, she never met Dr. Paller, or heard of FIRST, I know she would have loved the conference, and I know that she probably played a part in me attending this one. There are plenty of questions that I have about my childhood that I will never know or understand and it’s okay. You can not live in the past, the most important thing is to be in the present, in the now, as they say.

Anke & Peanut

Anke & Peanut

So, for the now, I am a lot stronger and more fearless than I was back in June. I take more pride and ownership of my ARCI CIE, it makes me “me” and I am very happy and blessed to have been given this life. I also do not feel the need to hide as much, stay under make up all the time. And on those days that it is so humid, and everyone is complaining, I walk with my head held high. I also can laugh inside when people are wearing shorts and I am freezing and in a sweater and pants. I am so very grateful to Dr. Paller, my dad and FIRST for everything and helping me out. I know that there is nothing that I   can not do, a person that I can not go up and talk to, because I am Anke, who loves to laugh, do new things and is not defined by just my skin. I look forward to future conferences, my work with FIRST, and growing the relationships I’ve created.

 - Anke Fronz

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How Can I Prepare for My Visit with an Ichthyosis Medical Expert?

So, you’ve finally scheduled an appointment with an ichthyosis medical specialist, but have no idea as to how to prepare – no worries, our physicians will guide you step-by-step on how to have most effective visit possible.
At the FIRST National Family Conference in Indianapolis this past June, we sat down with Drs. Keith Choate and Philip Fleckman and asked them that very same question. Here’s a video clip of our interview, followed by a checklist of the critical steps necessary to prepare when meeting with an ichthyosis specialist.

• Educate yourself as much as possible, beforehand. The FIRST website is a wonderful resource with abundant information on the both the clinical and emotional aspects of many types of ichthyosis and related skin types.
• Bring the affected person to the visit only and leave the rest of the family at home, if possible. This will help with concentration, focus, and ensure that you cover all your areas of concern. The more relaxed you can remain, the more effective the visit will be.
• Discuss the situation with your spouse, or family members, that will not be at the doctor visit. Write a list of their questions and your questions, so you don’t forget anything, and bring it with you.
• Write a summary, journaling what your experience has been since you or your child was diagnosed. Reach out to the doctor before the first visit, by either mailing, emailing, or discussing it with them over the phone. Let them know the exact genetic diagnosis if you have that information, symptoms, concerns, and specifically how ichthyosis is affecting your lifestyle. Writing it down may also take some of the emotion out of the story, so you can remain focused, and also help the doctor to better prepare for the visit.
• Bring all blood test results, physician reports, photographs, etc. – anything that has been medically recorded.
• Always remember there is a difference in what you read on the internet, and what the average experience might be. Many times the internet is filled with “worst case scenario” stories. At your visit, discuss the things that scare you with your doctor. He or she will be able to discern medical fact from hype and sensationalism, and provide more supportive stories, people and resources.

Don’t hold back on discussing anything that comes to mind, particularly issues that have made you uncomfortable. This visit is an opportunity to educate yourself and to give yourself peace of mind.

“Why is my skin red? ‘Cause blue is taken!” …Teen Panel a Smashing Success at FIRSTNFC!

photo(17)Two open and candid teen panel discussions, moderated by Program Director Moureen Wenik, took place on the final day of the National Family Conference. Nearly every seat full, it took only a minute for parents, siblings, and other affected members to enthusiastically ask questions, jot notes, and ultimately discover that this was as rare and unique an opportunity as any – getting inside the minds of teens! From how to keep their cool when strangers stare, to the pros and cons of parents’ ”picking at their skin,” these teens opened up and let the audience explore their situation, from their eyes; in their shoes; in their skin. Additionally, not only did the panel consist of those teens affected, but also included teen siblings of those affected for an even broader family member perspective on life with ichthyosis.

Some key takeaways from the discussion included:

Silence Isn’t Always a Bad Thing: The teens seemed to agree that sometimes they are “quiet” about their situation because they are coming to terms with it themselves. “We don’t always want to talk about what’s happening every day. Trust that if it’s serious enough, we will come to you,” said one teen girl.

Conf2014-MW (13)-1Listening is Key: Many teens encouraged parents to listen as carefully as possible. One teen remarked, “If you put a cream on me and I say it hurts, please listen to me and don’t force the issue. Even if you’ve heard it works for lots of other people, it may not work for me.”

Follow Our Lead: One teen remarked, “If I don’t want my skin showing, I don’t want it showing. If I want to wear leggings, I should be able to do so.” Ultimately she encouraged parents not to worry, and to follow the emotional lead of their children. “If I’m happy and comfortable with how I look, or what I’m wearing, my parents should be happy too.”

Public Grooming/Dusting: Parents were curious as to how the teens felt about them constantly picking at them or “dusting them off.” Most teens agreed that they were in fact used to it, and that the constant fussing did not greatly upset them. However, they also encouraged parents, that if it was not too much skin, perhaps they could wait until they got home. Another teen remarked that ultimately, “parents should teach kids to check themselves, and make it a lifelong habit.”

Leaving Home: Teens that are preparing to leave for college shared some concerns that they are currently addressing, including air conditioning, securing a private shower, and informing others of their conditions (more on preparing for college). One teen leaving for college this fall remarked, “I worried about what my roommate would think, because I can’t change my skin. But then I explained everything to her, and she said – no big deal. I have ADHD, does that matter to you?!” Another young adult from the audience offered advice based on her own college experience. “Talk to them, be honest and upfront with your roommates. It will also help by letting them know, so that they can support you, in case there is a medical issue – someone around you should know about your condition, particularly if you do not have family close by.”

Overprotective Siblings: From the sibling perspective, it seemed that most of them had more of a difficult time dealing with the skin condition than the affected individuals. A few of them commented that they feel very overly protective of their sibling, and when people make comments or stare, they “lose their cool,” and tend to want to react in an angry and aggressive manner. “I think it’s normal to get upset for your sibling. However resorting to violent comments and behavior is never a good thing. Just try to explain the situation to them, and also, if it’s a younger sibling, you don’t want them to see you getting angry. It’s not a good example,” said one teen sibling.

Transitioning from a Small to Large School, or Starting School in General: The consensus was that having the parents, along with the affected child, go into classroom and inform people about their skin condition was a positive experience. However, one teen strongly suggested, “Make sure that the affected person is prepared to answer the questions themselves, even beyond when the parent is there. Make sure they really know their condition, and how it affects them, so they don’t feel badly for not knowing what to say.”

Speak for Yourself:  For younger children, one teen suggested that maybe it’s not one hundred percent necessary for them to always use the medical terms to discuss their condition. Perhaps if they use their own words to describe their skin, like severely dry, rather than a medical term, it would make the situation more relatable.

Using Your Sixth Sense: Humor – Sometimes turning an uncomfortable question or conversation on its head with a little wit, may be a great way to show peers there is more to you than your skin. One teen commented that whenever he is asked why skin is red, he replies, “’Cause blue was taken!” Although this is not a solution in its entirety, it can really break the ice and lead to a more informative conversation.

We are enormously grateful to our two amazing teen panels for their courage and willingness to share an inside perspective on life as a teen with ichthyosis, and we wish them all the best of luck in all they do!

Not able to make the FIRST National Family Conference? Stay tuned with #FIRSTNFC

 


062212-5436(1)If you are unable to attend the FIRST Family Conference, not to worry. We’ll
be sharing the “Indy 2014″ experience with you, as much as possible, on
Facebook and Twitter throughout the conference. You can look forward to
interviews with attendees and same-day photos of all the families, friends,
and activities!

Be sure and stay in touch with all the excitement by using #FIRSTNFC, the
official conference hashtag! Plus, after the conference we’ll be sharing a
post conference summary, including video clips of presentations along with
news articles, blog posts, and e-mails derived from the very latest
research, treatments and tips for living with ichthyosis, as discussed a2014 Conference Logo-WEBt
the conference.

The FIRST National Family Conference kicks-off on Friday morning, June 20 at 7:00am EDT, and will continue until Sunday, June 22 at 1:30pm. Stay tuned!

 
 

Conference Update: When it comes to Ichthyosis, Do Women Have Different Concerns than Men? Yes.

2014 Conference Logo-WEBAt this year’s National Family Conference in Indiana, Bethanee Schlosser, MD, PhD will  lead a new breakout session, “Unique Considerations for Women with Ichthyosis.” During this session, Dr. Schlosser will identify and address the unmet needs of women with ichthyosis as it relates to their overall skin health, sexual functioning, and quality of life.  This is a unique learning opportunity for women, including a rare chance for women to voice personal experiences and concerns, in a safe and comfortable environment, and to ask those “taboo questions” often left unspoken. The session will include:

  • Effect of ichthyosis on specific functions (breast sensation, lactation, sexual function, etc.) as well as quality of life.
  • Women’s skin health as it relates to vulvar mucosal dermatology.
  • Patient-to-patient resources; group discussion; Q & A …and more!

This is a session for female attendees in any stage life. And, for those of you who may not be able to attend the conference, as with many of the conference breakout sessions, we will provide a recap article, featuring highlights from the session, in our online post-conference summary.

About our Worshope Leader:

Bethanee Schlosser is a Dermatologist and Assistant Professor at Northwestern Medical Faculty Foundation.

Should Grandparents & Extended Family Attend the FIRST National Family Conference?

 

 

At some point in their journey with ichthyosis, individuals and parents with affected children will need assistance, both physically and emotionally, from someone other than their medical practitioner. In difficult times, a reprieve from the day-to-day, a shoulder to lean on, or simply a trustworthy listener, can truly be a life-saver. More often than not, this type of support comes from extended family.  And although it can be stressful, turning to family in these types of situations may not only be therapeutic, but can create unbreakable bonds for parents, grandparents, and siblings.

Perhaps you are the grandparent, aunt, uncle, or sibling of an individual affected with ichthyosis, and are contemplating whether or not to attend the upcoming FIRST National Family Conference?  Over the years we have met countless individuals who were contemplating this very same decision, many of whom ultimately decided it was best to attend the conference, not knowing really what to expect, or if they would gain any benefit at all. Cina,Sean-Portia-Jolie-Mary-Dave2

Mary and David Cina, grandparents of  Myles and Portia Cina, affected with ichthyosis en confetti said, “We attended and will continue to attend FIRST conferences to support our son, daughter-in-law, and grandchildren.  We have learned a lot and enjoyed meeting other families, learning their challenges, and how they have dealt with them.  The doctors provide a wealth of knowledge and are very approachable, willing to help and teach all attendees.” (The Cina Family pictured left)

 

Chrissy See, a sibling of member Rachel See, also affected with en confetti ichthyosis, is not only attending the conference in Indiana this year, but has played a pivotal role in helping to gather items for the conference fundraising raffle. “My family has always been a huge inspiration, and recently my friends, respected colleagues, and even “strangers” have become my new source of inspiration for my involvement with FIRST. In fact sharing on our company community webpage to 200 work friends created generous donations and support. I am looking forward to attending the FIRST National Conference because it will also be a special opportunity for me to learn and grow from others. Awareness is the first step to curing ichthyosis and I am inspired by others to take that next step for my family.” (Chrissy See pictured right).

And Kellie Wilson, sister of Shannon Hamill, and aunt of Lauren Hamill affected with harlequin ichthyosis, has been by her family’s side siKellie Wilson, Shannon Hamill, Kelly Klafternce day one. “ My niece Lauren was born with harlequin ichthyosis. Two words no one in my family had ever heard before. Now the word ichthyosis has become familiar to me and my family and it is not as scary anymore, thanks to the FIRST Family Conferences.  It was comforting knowing that they were not alone and that there was a whole community out there for them to learn from and to share their stories with. The first time in Chicago I was there as more of a supportive role. I wanted my sister and her husband to attend as many discussions as possible without having to worry about Lauren. However, this will be my third conference and I am looking forward to seeing everyone again. ”

 Although there are numerous opportunities for networking and education at the family conference, in the end, it seems that sometimes simply “being there” for a family member may just be the most meaningful kind of support you can give. (Kellie Wilson, Shannon Hamill, Kelly Klafter pictured left).

 

 More Conference Information.

 

 

 

 

Dermatologist Discusses Integrative Approaches to Skin Care, at the National Family Conference.

 

Some of the most popular “eastern” wellness practices have made a permanent impression on the western physical fitness scene, including the practices of Meditation, Yoga, and a nutrient-dense, Plant-Based Diet.

shutterstock_137890049Meditation has been associated with increased focus, and tension relief, while Yoga is widely recognized as a practice for building muscle, increased joint flexibility, and a way to relax the overactive mind.  (Read how one FIRST member, uses Yoga to improve core strength and flexibility, reduce body aches and pains, and lower mental stress).  An exciting, energized and in-depth look at the benefits of these “integrative medicine” practices will be presented at the National Family Conference during the breakout session: Stressed Out? Natural approach for wellness, balance, and healthy living.  This session will be led by Vindhya Lakshmi, Dermatology Resident at Indiana University. Vindhya will discuss how making a few small lifestyle choices, can produce BIG results. Her session will include:

  • Intro to Yoga: How yoga can help reenergize and strengthen your mind, body and spirit
  • Meditation 101: Learn quick and easy breathing techniques to re-center and recharge
  • Fruits, Veggies, and Smoothies OH MY -Yes you can make healthy changes today! 
  • How to Break the Routine and create healthy, long-lasting habits.

 About Our Workshop Leader:
Vindhya is a driven, energetic & proactive Dermatology Resident at Indiana University with a strong and continually expanding passion for overall integrative & holistic wellness. Her future practice will focus around integrative approaches to improve skin care, utilizing both eastern and western techniques. She also advocates a plant-based lifestyle, and is dedicated to empower others to live more fulfilling, proactive lives.