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Not Enough Vitamin D Research for Ichthyosis Patients with Healthy Diet

In response to a recent research article published by the American Academy of Pediatrics, pertaining to ichthyosis and vitamin D deficiency, FIRST consulted with our Medical & Scientific Advisory Board (MSAB), to find out more about the possible connection.

As noted by MSAB member, Dr. John DiGiovanna, ”It is important to note that the children in this article (from India) had vitamin D so severe they had rickets, a skeletal manifestation of vitamin D deficiency. It is likely they were broadly nutritionally deficient. We no longer see that in the US.  Vitamin D testing is widely available, and supplementation to normal levels is widely encouraged by dermatologists-since we also highly recommend sun protection. Vitamin D can be generated from sun exposure, diet or nutritional supplementation. Although this is likely not relevant for most ichthyosis patients, however, vitamin D supplementation is very reasonable. Of note, there has not been extensive research on vitamin D supplementation for ichthyosis patients who have a healthy diet and are not suffering from vitamin D deficiency.”

Dr. DiGiovanna, also added, “The optimal levels of vitamin D are not universally accepted. The old RDA-recommended daily allowance was based on preventing rickets. So if you took that amount, you avoided deficiency and the bone problem. Recently some have advocated that larger amounts of vitamin D may help prevent other more subtle problems. So higher levels have been advocated. Since sun exposure is one way to get vitamin D, and since skin cancer is directly linked to sun exposure, there is increasing interest in oral supplementation to prevent adverse outcomes such as osteopenia, etc. Serum levels to measure vitamin D are widely available, and vitamin D oral supplements are in most multivitamins and available as vitamin D alone. A normal level of serum vitamin D is recommended for general health.”

Before taking any new vitamin supplementation FIRST highly recommends you consult your healthcare practitioner.

Weak Teeth & Ichthyosis: Is there a connection?

 

Dr. John Browning

Please join us in welcoming back FIRST’s Medical & Scientific Advisory Board (MSAB) member and medical guest blogger, Dr. John Browning from UT Health Science Center at San Antonio, Texas. Today, Dr. Browning discusses the “hot” topic of dental issues and ichthyosis.

We have noticed many comments and concerns arising lately from the FIRST community over the question of “weak teeth” with ichthyosis.  Most people with ichthyosis do not have any problems with their teeth. However, oral and dental reports in ichthyosis have included gingivitis, periodontitis, enamel hypoplasia, high rate of tooth decay, bruxism (grinding of the teeth), delayed tooth eruption, abnormally shaped teeth, and raised hyperkeratotic tongue plaques.  Because there are many genes and types of mutations that cause ichthyosis, tooth involvement depends on the exact mutation and how it is expressed.

For example, autosomal recessive congenital ichthyosis (ARCI) is caused by multiple mutations which can cause the skin to look similar but might have other associated abnormalities. As we continue to learn about the different genetic mutations associated with ichthyosis,  we will then also understand better which types are associated with abnormal teeth.

Stay informed! You’ll receive skin care tips, research news and ways to connect all year long when you sign up for FIRST’s FREE E-News!

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Can I Afford a Microbubble Tub?

The truth is…maybe.  In recent months, there have been many online discussions, comments and questions regarding the benefits and cost of a  bath tub that utilizes microbubble technology. Many FIRST members have tried the tub with positive results with regard to skin removal, and many who have not had the opportunity to try the tub are curious to see if it might help with their condition. We gathered some facts and figures from the FIRST community to help you decide whether or not this is the right pursuit, and if so, how you might offset the costs.

Firstly, as many of you know, bathing and exfoliation is one of the best ways to care for the skin of those with ichthyosis. Bathing is very important to the shedding process, as it not only cleanses the skin of dirt and other external debris, it completes the natural process of shedding, or sweeping away of spent and finished epidermal cells. And bathing frequently can make a world of difference in caring for your condition.  The technique of microbubbles is relatively new to our community, and to date, there has been no medical research to support the statement that the microbubble technology is specifically beneficial for those affected with ichthyosis. FIRST does not recommend any particular type of bathing since ichthyosis is very individual to each person and results vary widely. Whether or not a tub featuring microbubble technology is useful, or the best solution for your skin condition, is a very personal choice. Therefore, it is highly recommended that you consult your medical practitioner prior to beginning a new skin care routine.

The cost of purchasing and installing these types of tubs, for many, would be considered a large expense (approximately $3000-7000, depending on the retailer and the cost of installation).  However, discounts for children may be available, so be sure and inquire prior to making your purchase. Additionally, there may be some opportunities for seeking financial support.  As a service to our members and for those contemplating the purchase, here is a suggested list of ways to find out more about the tub as well as to possibly find financial assistance:

Sample the Tub Before Making a Purchase

One member went to a spa with her affected son, where she knew the microbubble tub was available to sample. This is a great way to see if this is a purchase worth pursuing.  Also some distributors will have sample tubs on display and it would be well worth a visit to do some research before considering a high-cost, risk purchase.

Contact Your Medical Insurance Company

Sean and Jolie Cina, whose two children are affected with ichthyosis en confetti, shared their experience – “We purchased a Microsilk® tub last spring as part of a bathroom renovation from an online retailer, paying $2,853, when it normally sells for over $4,000.  Once the renovation was complete, we decided to attempt to seek reimbursement from my insurance company (Aetna).  We only looked for reimbursement for the actual tub, not installation, as we thought that would be difficult to substantiate since the entire bathroom was remodeled.  Here’s what we included in our paper claim:

  • Insurance Cover Letter We were sure to review the insurance company’s policy on durable medical goods.
  • Claim form from the insurance company
  • Letter of recommendation for therapeutic baths from a dermatologist we work with
  • Page from Jason Hydrotherapy website claiming it can help with ichthyosis
  • Every medical record pertaining to our daughter’s skin from day one.  This is the most important part. We knew that this claim would go into medical review.  Once this happens, the insurance company will deny and/or ask for records.  We decided to send them all at once to help speed up the process.  It is best to include every record from every visit to any doctor pertaining to the person’s skin.

Overall, the entire package was about 40 pages. We then monitored the claim online and contacted customer service about every two weeks to follow up.  Make sure to take notes on who you speak with and what they say. We filed the claim only one time, and did not have to appeal. We successfully received 70% reimbursement for the cost of the tub.”

Ask Your Community for Assistance with the Install

After the purchase of the tub is made, the other tricky and costly expense is the installation, and possible bathroom remodel.  Reach out to your community and see who might be available to volunteer. Your church, community center, school, library, or healthcare practitioner may be of assistance in seeking volunteers.  Also, contact your local media and let them know of your situation, as they may be able to heighten the reach of your message. In addition to helping your family, you’ll be raising awareness for the entire ichthyosis community.

Keep in mind, you may need a contractor, carpenter, plumber, and possibly an electrician, architect and/or home remodeler.  At the very least, a local contractor might be able to help with the install at cost, once he is aware of the rare skin condition affecting you and your family.

Once the community is aware of your situation, you might be surprised who will step up and help. Be sure you use certified pros and a solid plan of execution before any tub purchase is made.

Raise Funds, Specifically for the Tub Purchase

There are many online fundraising platforms that can be used through social media (i.e., Gofundme). Tell your story and share it with your online community. Or you can hold a traditional grassroots fundraiser – a bake sale, fun run, coin collection etc. Many people, once they are informed, are more than willing to support your cause. Be very specific about the amount of money you’ll need and be sure and keep your community informed of the progress, purchase, and the outcome. Share photos of the entire endeavor!  They’ll want to know their donation was used as promised, and that they have made someone’s life that much easier.

If you are interested in learning more about microbubbles, Microsilk®, or connecting with someone who has had a successful experience, please contact Moureen Wenik by phone at 800.545.3286 or email at mwenik@firstskinfoundation.org.

For more tips and news from the ichthyosis community, sign up for FIRST’s FREE E-News:

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Can Ichthyosis Cause Swollen Lymph Nodes?

Dr. John Browning

Dr. John Browning
Pediatric Dermatology
Adjunct Associate Professor, UT Health Science Center

 

A member recently wrote into FIRST to inquire about the fact that she often felt swollen lymph nodes around her affected child’s neck.  We reached out to Dr. John Browning, from UT Health Science Center, to find out when lymph nodes are a concern, and if swelling can be a side effect of ichthyosis. Please join us in welcoming back FIRST’s medical guest blogger, Dr. John Browning.

Lymph nodes are small bumps below  the skin.  They are often too small to be palpated, or felt, but they can become enlarged during times of infection or active inflammation and from certain types of cancer.  Our tonsils are also a type of lymph gland, which is why they become swollen during times of a throat infection. Lymph nodes contain lymphocytes, a type of white blood cell, focused on fighting infection.  But they are also enlarged from inflammation.  Lymphocytes normally travel throughout the bloodstream looking for viruses, bacteria, and other invaders.  When an infection is recognized by contact with an antigen, a type of substance identifying the pathogenic organism, the lymphocytes travel to the lymph nodes where they create armies of lymphocytes and antibodies to protect the person.

In persons with ichthyosis, lymph nodes are often enlarged due to chronic inflammation.  Just as the ichthyosis skin is warm and red, the cutaneous lymph nodes are active due to an increase in circulating lymphocytes.  Essentially the lymphocytes and lymph nodes are “turned on” even though there is no infection.

Although we have cutaneous lymph nodes throughout our bodies, there are increased zones of lymph nodes along the back of the neck and the armpit and groin folds.  It is easier to palpate, or feel, lymph nodes in these regions.

One exception to enlarged lymph nodes being “normal” in ichthyosis is in Netherton syndrome.  Netherton syndrome, unlike other types of ichthyosis, is characterized by a decreased skin barrier, rather than thickened skin.  Although lymph nodes in Netherton can be enlarged due to infection and inflammation, there is a report in the medical literature regarding enlarged lymph nodes in Netherton due to use of paraffin-based emollients.  Paraffin is not usually absorbed through the skin but, due to the impaired skin barrier of Netherton, transcutaneous transfer can occur, resulting in a reversible disease of the lymph nodes. (Br J Dermatol. 1999 Sep;141(3):562-4.)

The majority of people with ichthyosis need not worry about enlarged lymph nodes as they are part of a healthy immune system.  If you develop a painful or unusually enlarged lymph node, you should seek advice from your physician promptly.

-John C. Browning, MD, MBA, FAAD, FAAP

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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 (www.blessedbybrenna.com), 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 (www.firstskinfoundation.org) 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!

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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.

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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 http://www.stopbullying.gov. 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 http://www.cdc.gov/ViolencePrevention/youthviolence/electronicaggression/index.html

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
USA

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, ipetition.com. 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.

Ref. http://www.nih.gov/news/health/sep2010/nichd-21.htm

Ref. Facebook.com; Youtube.com, Ipetition.com

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?

Balog-Ryan-2015-web

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.

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(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

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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

 

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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.