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Posts from the ‘Ichthyosis Support’ Category

Local Volunteer Talks Ethics, Advocacy & Why He Chose FIRST

“Ultimately I want to connect the narratives and provide a support system in the same way you do here at FIRST.” Sigfried Aragona, FIRST volunteer

Where would we be without the kindness, compassion and generosity of others? It never ceases to amaze us how people are so moved and inspired by the FIRST community – so much so that they are compelled to reach out and offer their services and skills in any way that might help. This summer, we’ve been privileged to be the recipients of one of these kind and generous souls, a local young man named Sigfried Aragona, who volunteered during his summer break, both last year and this year, at our Colmar national office.

Perhaps you’ve seen him on our Facebook page, because “Sig,” as friends call him, was willing to do just about anything we needed to keep our RAISE campaign thriving, and equally as important, to keep our mission to educate, inspire, and connect all those affected with ichthyosis, alive and well. When he was asked to handwrite the addresses on 200 envelopes and 50 thank you notes, (the mere thought makes my carpal tunnel ache), he said, “Sure sounds good!” In fact, he sat down promptly and got straight to work.  Even when we requested the extreme, Sig obliged with a smile.

“Will you lead our Zumba fundraising marathon?”IMG_0460

“Of Course!” Sig said.  (Note to those considering volunteering – be wary of sharing your hobbies with the girls at FIRST! Ha!)

With his cheerful attitude and overly abundant willingness to help, Sig has been an absolute gem and a blessing for the office, two summers in a row.  In fact, we’ve been in a bit of a “gratitude haze” about Sig. So much so that we had never really asked Sig what inspired him to contact us?  Surely there were other organizations to which he could have volunteered. We didn’t even really know precisely how or why he found us, even though we are eternally grateful that he did.

We sat down with him to find some answers.  We were pleasantly surprised that this kind young man had observed, and subsequently was drawn to FIRST, in the very same way and for the very same reasons as the FIRST staff, members, partners, doctors, and many other volunteers themselves.

But that’s not all. Sigfried Aragona, like FIRST, has a big, beautiful world-changing mission of his own.

How did you discover FIRST?

SA - I am a nursing student at West Chester University. I wanted to volunteer somewhere that was health-related, in the nonprofit arena, and truthfully you popped up at as a local advocacy organization.  And I lean towards advocacy because it is a passion of mine. That’s what brought me here the first year. Learning about your mission is what brought me back this time.

Why advocacy versus a clinic or healthcare facility?

SA – The idea of filling in the gaps of health disparities for those who are not getting support of health insurance, health care providers, or other governing voices, is my passion. Later down the road, I’d like to do advocacy for the LGBT community. I’d like to work for a medical organization addressing specific disparities in that community, but I haven’t narrowed that down yet.

I also aspire to complete George Washington University’s LGBT Health Policy and Practice Program, as a part of my post-undergrad education. Policy and ethics is a realm of nursing I am very interested in. And working at an advocacy organization like FIRST will help me to get the perspective of how patient advocacy fits into the ethical experience of healthcare.

Have you made any observations, learned anything new, or had any revelations since you’ve been volunteering here?

SA – Yes, many things. But one thing that stands out to me is that I think it’s interesting that FIRST has a very ambitious and big mission, and has made huge strides, with only six women, working in a small office above a dentist office. It strikes at the core of what advocacy should be. It doesn’t have to be grandiose. FIRST, no doubt, has a purpose – it’s as simple as that.

How was your passion for advocacy inspired?

SA – My passion for advocacy came from my experience as a member of the forensic speech team. The definition of forensic is the dissection of things.  So this team focused on the dissection of ideas. Political, social, and philosophical. The district of the team ranged from New York to Ohio to Virginia. There were poems, interpretive performances, speeches, etc.  So I heard a lot of presentations, in very unique ways, about communities who have not had a voice. I have found an outlet through this speech team community and it opened my eyes to the idea that it is necessary to hear the caliber and the many different perspectives of these issues to really understand. Once you hear these stories you want to do something. You want to help. I now want to turn my career into an advocacy experience.  I want to find my unique place in the world. Ultimately, I want to connect the narratives and provide a support system in the same way you do here at FIRST.

Please join us in thanking Sigfried for his many contributions, as well as all the generous volunteers at FIRST. Your time, talents, and warmth provide support for our community, today, tomorrow and for many generations to come.

And…you, no doubt, have purpose. It’s as simple as that.

Strategies for Success in the ER

Emergency room visits are a fact of life for many people with rare diseases. For many types of ichthyosis, overheating, heat stroke, or a sudden skin infection, among other illnesses, can play a large factor in the frequency of ER visits. And, when the patient is a child, these experiences can be especially stressful for the entire family. Here is a check list to help you prepare for the ER, long before you need to make the trip. Some are simple, some require a bit more effort – but all may make your experience as smooth as possible:

Prior to your child getting sick or injured, ask your pediatrician and pediatric specialists where you should take your child for emergent care. Remember to inform your child’s daycare or school of your ER/hospital choice should an emergency arise.

Create and frequently update a list of your child’s diagnoses, surgeries, medications, allergies, vaccinations and special diets. Be sure to include the name and date of the surgery and the concentration/dosing/frequency of all prescribed (and non-prescribed) medications and formulas.

Prepare an ER to-go bag. Fill it with comfort items, warm clothes, phone charger, snacks, medical records, ichthyosis educational booklets, and a copy of the updated health care list mentioned above, so you can grab and go when needed.

Prepare an emergency pocket card for first responders who arrive at the scene. (Or, hand them an ichthyosis awareness card from FIRST). Be sure to include the name and contact information of your ichthyosis healthcare practitioner as well as the FIRST website and contact information: and 215.997.9400.

Have a print out from the FIRST website explaining your or your child’s condition so you can hand it directly to the ER doctor. As ichthyosis and related skin types are rare, they may have little or no experience treating the condition.

Use your voice and encourage children to use their own. Explain everything that has occurred, as well as how it may have been handled in the past, and ask your child to explain their symptoms in their own words. Sometimes a clue for treatment pops up when a child offers their own description. (ear hurts, tummy hurts, etc.)

Be sure and have your speech prepared.  For example, “My child has ichthyosis and cannot sweat due to her condition. She is prone to overheating and that is what has happened here.” Or, “My child has developed a sudden infection due to her skin condition. She likely has a fever and will likely need antibiotics immediately.”

Be sure to give a Medical Consent note to your child’s guardians. If there is an emergency, they will be able to authorize care for the child. Also remember to inform them of your preferred ER choice.

Find out if your local hospitals, and hospitals near your child’s school, have a Child Life Specialist on staff. Keep their name and number handy. In an emergency, they can meet with you in the ER and can offer support and guidance during a highly stressful situation.

Try and stay as calm as possible. Breathe and realize everyone is doing their best. Your child’s life is what matters and everyone is on the same team. Again, being prepared beforehand can help avoid a panic situation.

Remaining informed and up-to-date on your child’s disease and medical history is an absolute necessity, for it affords you the opportunity to actively collaborate in your child’s Emergency Care management and treatment. Always remember, as the expert on your child and a vital member of the medical team, never be afraid to voice your thoughts and concerns during any medical encounter!

Need more tips for connecting with ichthyosis healthcare professionals? Find out how to prepare for your appointment with an ichthyosis medical specialist.


4 Top Tips for Surviving the Season to Socialize!

WestlakesMeeting new people at holiday gatherings can be a festive and fun way to celebrate the season. But for those with visible differences it can also present some uncomfortable challenges. Here’s some quick, easy tips (including some from FIRST member and blogger Courtney Westlake) to avoid awkward discussions or situations, and enjoy some good cheer all season long.

1)      Create a simple one-sentence explanation for new people you may encounter at a holiday party (or the forgetful.) Try something like, “I (or my child) have/has a rare skin condition, that isn’t contagious, but doesn’t allow my/her skin to function properly. It’s a bear in the winter months!” Try to keep it quick and simple, and move on to the next topic. After all it’s a festive atmosphere, not a medical conference, and most people will gravitate toward easy, light-hearted conversation in these situations. FIRST member Courtney Westlake (, says, “Sometimes, I’ll try to help a person relate to Brenna’s skin, and the winter can be a good time for that because a lot of people’s skin is drier in the winter. Finding a connection can help a stranger relate better. I might say something like Brenna’s skin gets much drier in the winter, just like a lot of people experience even without a skin disorder.”

2)      Host at your home – For the most part, neighbors, friends, co-workers and family will be aware of your condition. Hosting a party of your own can be a great way to avoid awkward questions or situations around the holidays.

3)      Get plenty of rest and relaxation and avoid the drama - The holidays combine high expectations, crazy relatives, strained relationships and extended time together. It’s the perfect recipe for drama. If the holiday gatherings are a little too woven with anxiety, feel free to say, “All the holiday hoopla is not great for me or my skin. I need to take a step back for a while.” It’s perfectly okay to step back from all the socializing, and enjoy some quiet time alone or with your family. Courtney Westlake also adds, “We’ve learned that if Brenna gets really run down, her skin suffers as a result. So keeping top priority on the health of her skin is also a great reminder for our family not to over-do it with the holiday activities.”

4)   Consider it an opportunity to raise awareness and educate  – If you feel so inclined, sometimes inquiries that arise in a social setting can be considered an opportunity to educate about ichthyosis, and perhaps even about FIRST.  If someone is interested in learning more, give them FIRST’s website address ( or phone number 215.997.9400. FIRST would be happy to provide them with more information.

In the end, it all comes down to understanding what works best for you, at the holidays or any other time of year, and simply informing a supportive community.

Need More Tips? Sign up for FIRST FREE E-News!





FIRST Member Lists Top Ten Reasons to attend 2016 FIRST National Conference

I have attended four FIRST National conferences, with my parents in the ‘90s and now my own family. Every single time I learn something new, make new friends, and leave the conference bursting with energy and hope for the future of our rare disease. If you or a family member is affected with ichthyosis or a related skin type, this is an absolute “don’t miss” event. Here’s why…

1)   Meet the Medical Experts - The National Conference offers the rare opportunity to learn from ichthyosis & related skin type experts. Experts. There are only a few in the country, and you can meet them, one-on-one! Free, fifteen minute clinical appointments are even available!

2)   Surround Yourself with Affected Families & Individuals - For once, ichthyosis is the majority. You’ll see people with your type of ichthyosis in the elevator and in the halls. You’ll see skin flakes on chairs. You’ll see people putting lotion on everywhere. Kids will hold hands with others and feel comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see it: you are not alone. This, by itself, is a life-changing experience.

3)   Make Friends that Last a Lifetime - Dealing with ichthyosis can be very isolating, not only for those affected, but for parents of affected children. Many parents feel overwhelmed with everything that comes along with an ichthyosis diagnosis, and the “ichthyosis family” is a support network that runs far and wide. At the conference you will no doubt spark connections for a lifetime.

4) Get ideas - Did you know that some people use a Dremel drill for their feet? That sleeping with surgical gloves can help your cream work? That UV rays are good for some types of ichthyosis but not for others? The wealth of information at the conference is always astounding – both medical and firsthand trial-and-error. Some of the most effective treatments I’ve found have been from suggestions at the conference.

5)   Stay In-the-Know – You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new with FIRST, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ichthyosis to a classroom or employer.

6)   See Your Future – The conference offers the rare opportunity to talk with those ahead of your life stage. New parents with affected toddlers can meet happy and adjusted teens with ichthyosis. Young adults can talk with 30-somethings about what it’s like to get a tattoo, get married, or nurse a baby while having ichthyosis. Adults can visit with seniors and find out what issues and solutions they’ve found for aging with ichthyosis.

7) Inspire Others - Ichthyosis makes for people of dignity, generosity, and perseverance. Sharing your strength with other new parents, other affected people, and even the dermatologists can be empowering to you. I’ll never forget how strong I felt when I was able to lift up a room full of parents just by sharing my own story. I am proud to know I have lessened the burden of others with ichthyosis.

8)   Have fun!  - From dawn till dusk, and beyond, the positive energy of the conference is contagious. We smile nearly the whole time we are there. The sight of the children playing together in the childcare room makes me tear up with joy. It wraps up with a Saturday night dance party and talent show! Plus, it’s San Diego. The beach, city, and nature are all right at our feet. Sign up for the FIRST San-Diego bus tour! A great opportunity to see the city and have fun with new friends.

9)   Meet the FIRST staff  - Did you know Jean Pickford has been with FIRST for more than 15 years? FIRST is more than just an anonymous funding source for ichthyosis resources, or an anonymous author of “fact sheets”. You’ll have a chance to get to know the FIRST staff, and to encourage them in the work they’re doing.

10) Score Free Samples - Generous sponsors and companies that are working on products just for ichthyosis contribute massive amounts of freebies—many of them are full size. The “swag bag” you’ll receive is guaranteed to make you feel like a red carpet VIP, and give you a few more things to try in your treatment.

-Denise Eiser, FIRST Member



What is Cyberbullying and How Can I Stop It?

Cyberbullying is bullying that takes place using electronic technology. Examples of cyberbullying include cruel text messages or emails, rumors sent by email or posted on social networking sites, and embarrassing pictures, videos, websites, or fake profiles.

As a member of the rare skin disorder community you have likely, at one time or another, been victim to discrimination, ignorance, or even violence.  And online cyberbullying has, unfortunately, increasingly made its way to the forefront of harassing and abusive actions towards others.  If you feel victim to online abuse, whether it be unauthorized or negative images, videos, comments, articles found on social media or elsewhere on the Internet, we encourage you to use your voice, take the appropriate steps and notify the representatives that can help. Below is a list of links, resources and addresses to which alerts and complaints can be sent for various online and social media companies. There are also links to resources on how parents can help their child respond to cyberbullying, as well as ways to deal with face-to-face bullying in general.

Use your voice. Report cyberbullying whenever it occurs. Together we can make a difference.


Advice from U.S. Health Resources and Services Administration:

The U.S. Health Resources and Services Administration advises parents to encourage children to tell them immediately if they are victims of cyberbullying or other troublesome online behaviors. The agency also lists a number of steps that parents can take to help prevent cyberbullying and how to respond to it at The site also includes extensive information on preventing and dealing with traditional forms of bullying. The Center for Disease Control also provides information on electronic aggression for parents, educators, and researchers at

How to report abusive posts on Facebook:

Facebook removes things that don’t follow the Facebook Terms (ex: nudity, bullying, graphic violence, spam). If you come across something on Facebook that doesn’t follow the Facebook Terms, use the report link near the post or photo to submit a report.

Other tools for addressing abuse:

It’s possible that you might see something you don’t like on Facebook that doesn’t actually violate the Facebook Terms. If you come across something you’d rather not see, you can:

For information about what is and is not allowed on Facebook, please read the Facebook Community Standards.

How to report harassing or abusive images and videos on Youtube:

You can report abusive behavior on YouTube content here.

You can also contact YouTube at the address below:

YouTube, LLC
901 Cherry Ave.
San Bruno, CA 94066

Fax: +1 650-253-0001YouTube, LLC
How to Start an Online petition:

You can create an online petition and circulate it to your social media network. The more attention is drawn to a particular situation, the more likely it will be addressed.

FIRST members, Tina and Roger Thomas, the parents of Mui Thomas, affected with harlequin ichthyosis have started a petition to end shock videos on YouTube, using the online platform, This is a powerful example of self-advocacy as well as an appropriate way to engage the community to promote positive change. You’ll find the petition here (please note: No donation is required. Their goal is to increase the number of signatures and the strength of the petition.): Sign here.

Alert the Media:

As a member of the rare disease community, the local media is often interested in telling your story and introducing the surrounding region to your situation. Contact them and tell them the whole story – from living with ichthyosis or a related skin type to how you have been harassed or bullied, to ways that you are hoping the community will get behind you and support your efforts. These stories of activism, advocacy and strength, often catch the attention of the online community as well, and may also help to raise awareness for your rare condition.

Please also refer to FIRST’s Strategies for Bullying Resource Sheet for more information on how to cope with rude behavior and bullying.



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

The 2016 FIRST National Conference-San Diego, is only 4 months away! If you are considering attending, we encourage you to read this article submitted by FIRST member, Anke Fronz, 5 months after attending the 2014 conference in Indianapolis.


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

Find out more about the 2016 National Family Conference.

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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.