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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.



UFIRST Scholars Talk College Prep & Ichthyosis

UFIRST ScholarsPlanning for college, both financially and emotionally, as well as academically, can be a daunting task. And, if you have a visible appearance difference, like ichthyosis or a related skin type, it can present even more challenges. We asked our UFIRST scholarship recipients just how they felt about planning for college, and whether or not having ichthyosis factored into their planning and/or decision making process. The responses varied greatly, and we’re excited to share them with you in upcoming weeks, beginning with today’s interview with 2015 UFIRST Scholarship recipient Ryan Balog, affected with Congenital Ichthyosiform Erythroderma (CIE). Discover how Ryan planned for college, what he may have done differently, and how he strongly believes in educating new friends about ichthyosis.

How did (or didn’t) ichthyosis affect your decision to attend college?


Ryan Balog

Having ichthyosis personally did not affect me in my selection of a college or deciding to go to college. I personally always wanted to become a math teacher and share my gift in math by instilling confidence in these skills to the next generation of students.  I knew  attending college would be required to reach this goal. Luckily, the college I decided on, LaRoche College in Pittsburgh, was very close to home and I will be able to commute and live at home.

What can you share with other teens, or parents of teens, regarding preparation for college?
If I were to share a few things about my preparation for college, I would mainly focus on scholarships. College tuition is so expensive to begin with, not to mention the added-on costs of books, housing, and dining. One way I personally was able to help reduce the cost was applying for a lot of scholarships, like FIRST’s UFIRST scholarship. A scholarship, here and there, can really reduce the cost of books and tuition per semester. My mom always says “If you don’t try, you will never get,” and I strongly agree with that, particularly with scholarships. So my college preparation taught me to apply for as many scholarships and aid as you can.


(L to R) Jelani Hedley, Braden Chan, Ryan Balog.
2014 National Conference-Indianapolis

What do you wish you had known about the process that you would like to share with teens?
One thing that I wish I had known more about prior to applying was the importance of being well-rounded. Luckily, I was fairly well-rounded, but could have done more. If I were to do it all again, I would definitely join as many school sports, clubs, and events as were available to me. I strongly suggest volunteering, if you do not already.  I volunteered as a junior camp counselor for Camp Horizon, Millville PA. They have a lot of these camps for kids with skin conditions throughout the summer.  I also volunteered at an assisted living facility, where I was in charge of running the bingo games. I personally learned that if you are on the borderline of getting into a school or getting a scholarship, they base a lot of their decision on your extracurricular activities.

How do you plan on telling others about your ichthyosis while at college?

I plan on educating fellow classmates and teachers about icthyosis. When I was younger, I would always be shy about telling everyone, but now I am more comfortable explaining the condition of ichthyosis. Nothing bad will happen if you ever share the story of your ichthyosis, and inform others about the condition. It will only raise more awareness and benefit you and others in the long run.


To Exfoliate or Not to Exfoliate?


John Browning, MD, FAAD, FAAP


Summer is here and, with that, there is commonly much discussion within the ichthyosis community regarding the best practices for exfoliation. Today, we are welcoming back FIRST Medical Guest Blogger, Dr. John Browning, member of FIRST’s MSAB and Chief of Dermatology at Children’s Hospital of San Antonio, as he offers guidance on how, when, or when not, to exfoliate.

I often get lots of questions from my ichthyosis patients about exfoliation. Should I exfoliate?  Is it good for my skin?  How often?   I thought this column might help to shed some light on this very topic.

First of all, what is exfoliation?  Webster’s Online Dictionary defines exfoliate as “to cast off in scales, laminae, or splinters.”  So exfoliation is the act of removing the outer scales from the skin.

For those individuals with hyperkeratotic ichthyosis (i.e. thickened skin) exfoliation may make you more comfortable.  These might be people with CIE, harlequin, or epidermolytic ichthyosis.  Of course exfoliation, while removing the scale, often brings out the underlying erythema or redness.  So you will trade the scale for the redness.  This is not an issue if the scale is more bothersome to you but it is important to keep in mind if you do not want to be red.

In other cases, such as Netherton syndrome, where the skin barrier defect is more severe, the skin should not be further exfoliated.  Exfoliation will only lead to increased sensitivity and irritation.

Some individuals with CIE or epidermolytic ichthyosis prefer to exfoliate by first soaking in a tub for an hour or longer.  They can then use a wash cloth or loofah brush to gently remove the outer layer.  Others might prefer a cream or lotion with ammonium lactate, salicylic acid, or urea to help soften and remove the outer layer.  Those with thick scale under their eyes have found that topical tazarotene can loosen the scales and allow their eyelids to close more fully.  Whatever the method, it is an individual choice and you need to find what works best for you.

Best wishes to all of you for a happy and comfortable summer! – John Browning, MD, FAAD, FAAP

Have you signed up for FIRST E-News? You’ll find ichthyosis research updates, member stories, best practices for skin care articles (like this one!), and so much more. Sign up today!

Part 2 – Can Ichthyosis Affect Levels of C-Reactive Protein?

After receiving several inquiries regarding our last blog post,  Can Ichthyosis Affect Levels of C-Reactive Protein, we reached out to our Medical Guest Blogger, Dr. John Browning, to request a Part-2 to the post, below. (see Part-1)

John Browning, MD, MBA, FAAD, FAAP

For some individuals with ichthyosis, elevated CRP may just reflect red and inflamed skin and not have any other systemic associations.  Of course increased inflammation could signal an increased metabolic rate with loss of fluids through the skin barrier.  These individuals will need to increase their fluid and caloric intake.  Others with elevated CRP could be colonized with bacteria (such as could occur in epidermolytic ichthyosis).  In Netherton syndrome increased CRP might be reflective of multiple allergens irritating the skin and the immune system.   As you can see, there can be many causes for elevated CRP and it is always important to seek further information from your doctor. For example, elevated cholesterol or lipids in the setting of elevated CRP could be more problematic and deserves plenty of attention.- Dr. John Browning




Inform your doctor about Tele-ichthysosis:

Please remind your doctor that FIRST has a tele-ichthyosis site where he or she can ask detailed medical questions, upload photos, and receive a prompt response from our ichthyosis medical experts.

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

Can Ichthyosis Affect C-Reactive Protein Levels?




Dr. John Browning, MD, FAAD, FAAP
Assistant Professor, Baylor College of Medicine
Chief of Dermatology, Children’s Hospital of San Antonio


Today, FIRST would like to welcome Dr. John Browning, a member of FIRST’s Medical  & Scientific Advisory Board, and frequent Medical Guest Blogger.  Recently, the foundation received a unique question from a member regarding how ichthyosis might affect the production of  C-reactive protein (CRP).  Dr. Browning explains the production of this protein, why it’s important for a healthy metabolism, and how symptoms of some types of ichthyosis might indicate a change.

“C-reactive protein, or CRP, is an acute phase protein that is produced by the liver.  Its production is stimulated following cytokine production by white blood cells.  Cytokines are messengers that allow different cells to communicate with each other.  In this case, it is as if the white blood cells are saying, “Hey, liver, we’ve got a problem over here!”  CRP is more sensitive and accurate than erythrocyte sedimentation rate (ESR), which was previously the standard for measuring inflammation.  However, CRP is more sensitive to acute inflammation than ESR.  It becomes positive quickly and also returns to normal quickly.  ESR, on the other hand, takes longer to become elevated and is slower to return to normal. CRP is a non-specific marker of inflammation.  It will be elevated any time the white blood cells are activated.  This can occur with fever, infection, pneumonia, hepatitis, dermatitis, or any time there is inflammation.  You can think of CRP as a red flag for distress.  Just like a red flag at the beach can be raised for a number of reasons (high tide, jelly fish, sharks, etc.), CRP can be elevated from any number of reasons when inflammation occurs.

In ichthyosis, you would expect CRP to be elevated when the skin is inflamed.  Individuals with Netherton Syndrome will likely have a high CRP as their skin is often inflamed and interacting with various allergens or irritants.  Others with epidermolyic ichthyosis might also have elevated CRP if they have blisters or secondary bacterial infections.  Likewise, those with lamellar or harlequin ichthyosis (autosomal recessive congenital ichthyosis – ARCI), might also have elevated CRP if their skin is inflamed. On the other hand, those with ichthyosis vulgaris, X-linked ichthyosis, or non-inflamed ARCI will likely have low levels of CRP.

If the skin is not red, hot, infected, or with blisters then CRP levels are likely to be normal. Warmth, tenderness, pain, swelling, and loss of function are the five cardinal signs of inflammation.  If these are occurring with your type of ichthyosis then CRP will likely be elevated.”  - Dr. John Browning

As always, FIRST recommends contacting your physician if you are experiencing unusual side effects with your skin condition. The Tele-Ichthyosis program is always available to your physician, should t

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

hey need to connect with an ichthyosis medical expert.


Why Donate to FIRST?

A fair and valid question. And, in fact, one of the most rewarding and exciting parts of the job, for the staff at FIRST, is to provide the answer. Likely you are already aware that donating to FIRST will ensure the continuation of the Research Grant Program, whereby the top investigators in the field of ichthyosis research will be supported in their pursuits to find better treatments and an eventual cure. However, as the global leaders in ichthyosis advocacy and research, it is not only our job to bring public attention to this rare condition and support the advancement of research, but to also embrace those living with ichthyosis today, and to help them live a rich, fulfilling, and healthy life. Your donations make this possible.Conf2014-TubBO-Melton-AS (5)

Did you know that one of the programs supported by your donation is our Regional Support Network (RSN)? The RSN offers numerous connection opportunities including regional meetings, family conferences, FIRST to Know conference calls, and access to an extensive network of ichthyosis experts. It is one of the many programs funded by individual donations, corporate appeals, fundraising events, United Way and CFC donations, and private grants. FIRST does not receive any governmental funding; it is solely funded by individual and private donations.

Perhaps you have even attended one of our events, been connected to a doctor or family in your region, or gained some insight about ichthyosis on a FIRST to Know conference call? If so, you may have a deeper understanding of the critical need for these types of personal connections, as well as the rare opportunity to build relationships with the top doctors in the field of ichthyosis. The RSN offers life-changing connections that may not occur in any other situation. Your donations make these connections possible.


When asked about the importance of the RSN, and how it has changed the lives of so many, Program Director, Moureen Wenik, said,

“The ichthyosis community is a small and very close knit community. I have witnessed the relief people feel when they have someone to talk to who really understands what it is like to have a child with ichthyosis, or be an affected adult. It is great to talk to someone who ‘gets it’ and doesn’t have to explain ichthyosis. The RSN provides a safe place for families to connect, whether through social media, by telephone, or face-to-face at a meeting. Often they have never met another person who shares the disorder. The feelings of isolation for new moms, parents of children with ichthyosis, or affected teens or adults with ichthyosis, can be overwhelming. This support network gives people the opportunity to talk to others who have experience living with ichthyosis and to share their feelings with others who understand.” Your donations help improve the lives of those in the ichthyosis community.

The RSN is only one of the programs supported by your donations. We’ll be sharing even more amazing ways your support is making a difference.DSC03579

FIRST encourages you to take advantage of the many opportunities and resources available through our foundation. And, we thank you wholeheartedly for helping us to provide them for you, each and every day.

More information on the Regional Support Network.

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

Why Should I go for Genetic Testing?

Genetic diseases are caused by abnormalities in a person’s DNA and can range from a small mutation in a single gene to the addition or subtraction of an entire chromosome or set of chromosomes. These abnormalities can disrupt the normal function of a vital system, such as the immune system or the nervous system, or prevent normal development of organs, bones, or in the case of ichthyosis, the skin.

Simply explained, genetic testing is a means of looking at a person’s DNA to identify the specific mutation that causes their condition. Sometimes, when a patient has ichthyosis, they have features that could fit with several different diagnoses because there are overlapping symptoms between the subtypes. However, many people with ichthyosis have never actually had an official genetic test, or been given an exact diagnosis – a situation that can have serious implications on an affected person’s health and the health of their immediate family members.

Have you gone for genetic testing?

Testing is important for both the individuals, families, and the scientists conducting research on specific genetic mutations. Amongst many other benefits, getting an exact diagnosis can help your doctor establish an effective treatment plan and provide a prognosis for families so they may successfully strategize for any foreseeable health complications. At the National Family conference in Indiana, FIRST sat down with Erin Loring, a Genetic Counselor from Yale University, and asked her specifically why genetic testing is so important:

Find our more about the Yale Gene Discovery Project.  Or, Find a genetic counselor near you.


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

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.





Topical Tazarotene for the Treatment of Ectropion in Ichthyosis

Many individuals affected with ichthyosis cite ectropion – an abnormal eversion of eyelids – as one of the most cosmetically displeasing aspects of their skin disorder. And although ectropion almost universally improves beyond the neonatal period, it can persist throughout life and medical consequences including keratitis,* conjunctivitis,* and epiphora* can ensue.

“Patients with ectropion usually try several different types of drops, creams and even surgery, with varying results,” says Dr. Brittany Craiglow. “Surgery can be a risky option, with a high rate of recurrence, or cosmetic results that are unsatisfactory. After our recent findings we are encouraging doctors to try less invasive alternatives, like topical tazarotene and other topical retinoids, as another potential treatment option.”

Dr. Craiglow, a former FIRST ichthyosis fellow and now an instructor of Dermatology at Yale, is the newest member of a team that includes Dr. Leonard Milstone, Chairperson of FIRST’s Medical and Scientific Advisory Board, and FIRST-funded researcher Dr. Keith Choate. This group is working to gain a better understanding of the genetic mutations that cause ichthyosis and to develop better treatments for ichthyosis. They have used topical retinoids on the lids of many ichthyosis patients and recently reported their experience treating a 77-year old woman with autosomal recessive congenital ichthyosis and long-standing bilateral lower eyelid ectropion. The observations were published at JAMA Dermatology Network.  An abstract of their observations is as follows:

Importance: Ectropion is a complication of certain subtypes of ichthyosis and is often associated with substantial medical and cosmetic consequences.  At present there is no standard of care for the treatment of ectropion in this population. Retinoids cause dyshesion and thinning of stratum corneum, thereby reducing hyperkeratosis that likely underlies ectropion in patients with ichthyosis.  As such, retinoids provide a potential effective treatment for ectropion in this group of patients.

Observation: We describe a patient with recessive ichthyosis for whom daily application of topical tazarotene produced rapid and persistent improvement of bilateral lower eyelid ectropion without adverse effects.

Conclusions and Relevance: Additional studies will be necessary to more fully and systematically address the safety and efficacy of topical retinoids for the treatment of ectropion in patients with ichthyosis; however, this case illustrates that topical tazarotene and other retinoids provide a potential treatment option for ectropion in this population.  We encourage clinicians to explore medical therapies as alternatives to surgical intervention for the treatment of ectropion in patients with ichthyosis.

Dr. Craiglow also noted, “It’s a good idea to start out slowly, as topical retinoids have the potential to be irritating. Patients can try the retinoid on one eyelid and compare it to the other to see whether or not it is effective” Dr. Craiglow also stated, “It is very important that this treatment be done under close supervision of a knowledgeable physician.”

FIRST will provide updates to this clinical study, as they occur.

Brittany G. Craiglow, MD; Keith A. Choate, MD, PhD; Leonard M. Milstone, MD
JAMA Dermatol. 2013;149(5):598-600. doi:10.1001/jamadermatol.2013.239.

*keratitis def: inflammation of the cornea — the clear, dome-shaped tissue on the front of your eye that covers the pupil and iris. Ref.
*Conjunctivitis def: Pink eye. An inflammation or infection of the transparent membrane (conjunctiva) that lines your eyelid and covers the white part of your eyeball.
*epiphora:def: watery eyes. Ref.

It’s Time to Do Something.


NIH Budget Cuts, Government Shutdown, and What You Can Do

The recent government shutdown has added yet another layer of challenges to the rare disease research community, as the shutdown includes the federal agency, National Institutes of Health. New research grants aren’t being processed at this time and frustrated researchers are grinning and bearing as their attempts at trying to get funding for their projects, or support for ongoing clinical trials, are on pause.

Hopefully, the shutdown is, at best, a brief blip on the screen – and at worst, a temporary annoyance. Of greater concern is the earlier debt-limit proposal back in August 2011 and the implementation of the “sequester” cuts in early 2013 – a problem that’s not going away any time soon. In fact, under sequestration and the current budget caps, the NIH was cut by $1.7 billion this year and funding for research is scheduled to face another round of cuts in FY14 and beyond.*  

And the cuts have, of course, hacked at our very doorstep.  Dr. Keith Choate, one of our FIRST-funded doctors and member of our Medical & Scientific Advisory Board, and an enthusiastic participant in FIRST conferences in events, mentioned during our regional conference in Mahwah, NJ, that his lab faces significant sequester-related cuts. It’s possible he may lose funding for a grad student in his lab, and with some of his current funding expiring in November, he’s expecting to have to make even further cuts to his lab, which means that he won’t be able to achieve as much as he had hoped.

Dr. Choate’s Gene Discovery Project at Yale has made a huge difference in the lives of many families affected with ichthyosis, and that project has discovered new genes relevant to ichthyosis. Isolating these different genes is important because it means we can tailor treatments and potential cures to specific mutations.  But, now, it’s up to us to be sure every voice is heard and that these doctors are given every possibility to continue their work with as little interruption as possible.


So what can you do to help?


Take action. Because it is a rare disease, ichthyosis is not well recognized, understood or researched. Increased education of our communities and elected officials will help gain the much needed attention, and hopefully lead to a better quality of life for ichthyosis patients, better treatments, and possibly even a cure.

As members of the NIAMS Coalition, we have been advocating for the following funding levels in the FY14 appropriations bills: $32 billion for the NIH and $541 million specifically for NIAMS, the branch of the NIH that supports skin disease medical research.  FIRST is making every effort to be sure that your voices are heard to those making the decisions that will affect your very future. But we need your help. You are the ones living the unique experience of ichthyosis, and struggling with a skin disorder, for which, currently, there is no cure.  We encourage you to write to your local paper and tell them your story; inform your local district representative or state senator of your situation; expose as much detail about ichthyosis, and how it has affected your life.  (Sample Letter)


Not sure who to contact?

House of Representatives’ website:  Type your zip code into the box in the upper right hand corner to find your representative.


State Senate: Enter your state to find your senator.


The louder we are, the more likely we’ll be heard. Follow #itstimetospeak on Twitter for self advocacy news and information from FIRST.


* 2013 AADA Legislative Conference