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Posts from the ‘Ichthyosis Skincare’ Category

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

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

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

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

About our Worshope Leader:

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

Do what you love and your skin will follow.

As many of you affected with ichthyosis already know, at times, this condition can present enormous challenges. And yet, as many of you also know there are still other times when ichthyosis is simply a background hum to the music of life.  Member Brian Gass, affected with CIE, is living, walking, and hiking proof that although his ichthyosis is a part of his life’s journey, it follows his lead, trailing far behind his pursuit of passions, dreams, and interests.

Recently Brian contacted us to let us know he’d be doing a little traveling this summer. Well, actually a lot of traveling – 2,650 miles up the spine of the Sierras from Mexico to Canada, to be exact. Although he is an avid hiker, racking up “over a thousand trail miles on three continents,” this journey will prove to be a journey of his lifetime. And for the benefit of others affected by ichthyosis who share in his love of the outdoors, periodically throughout the summer he will be reporting back to FIRST and on his blog:   (http://hikeonthegoodfoot.blogspot.com/).  Not only will Brian be sharing an up-close view of the most breathtaking terrain, but he will be sharing everything he learns and experiences about the care and safety of his skin along the way.

We are happy to share Brian’s mission and his message: do what you love first and your skin will follow. 

Here is a personal note from Brian with more information regarding the details of his upcoming adventure.

Skin Infection in Ichthyosis

 


Dr. John Browning

 

 

 

 

 

 

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

 

Today, we’d like to welcome Dr. John Browning, a member of the FIRST Medical Advisory Board, and our very first Medical Guest Blogger, as he discusses signs, prevention and treatment of infection in ichthyosis.

Skin Infection in Ichthyosis

Since patients with ichthyosis have an impaired or abnormal skin barrier, they are at higher risk for certain types of infection.  In particular certain fungal infections can often hide out from the immune system while infecting areas of thickened scale in the skin. This has been reported most frequently in cases of ichthyosis vulgaris, lamellar ichthyosis, and keratitis, ichthyosis and deafness (KID) syndrome, although any type of ichthyosis with thickened scale is at higher risk.

People with ichthyosis can also be at high-risk for certain types of bacterial infection.  In particular individuals with epidermolytic ichthyosis can become colonized with staphylococcus aureus, as well as other skin pathogens. This colonization can lead to infection.

Colonization vs. Infection

Colonization refers to bacteria living on our skin for long periods of time without the onset of infection.  It can often be noted from increased irritation and maceration (wetness) of the skin with a faint odor.

Active infection occurs when a bacterial strain undergoes uncontrolled growth. When the body attempts to mount a defense against this overgrowth you begin to see the typical symptoms of infection. Infection is characterized by warm and tender skin with increased drainage.  If there is concern for a bacterial infection, a swab can be taken in the clinic, which can let you know if an infection is present.  However it takes 48 to 72 hours to have results from a bacterial culture.

Prevention

Taking dilute bleach bath by adding a half cup of bleach to a bath tub (¼ cup if tub only ¼ full, or 1 tsp per gallon) can help reduce colonization and prevent infection.  Although this sounds like a strange recommendation, bleach has been used for many years in medicine.  Unlike antibiotics, there is no risk for resistance when using bleach.  Often patients benefit from continued use of dilute bleach baths or bleach washes in order to prevent infection.  It is important to remember that the concentration of bleach in a “bleach bath” is similar to the amount of chlorine in a swimming pool. (While bleach baths are helpful in preventing bacterial skin infections, they have not been shown to prevent outer ear infections (otitis externa).  If prone to ear infections then consider adding a couple of drops of a mixture of rubbing alcohol and white vinegar 1:1, to each ear after bathing).

Is important to recognize areas of persistent drainage or pain, as well as discharge, which may be a sgn of infectio. Be sure to see your doctor who may need to start you on an oral antibiotic.  Remember: bleach baths only prevent infection but cannot treat a bacterial infection once it has occurred.

Treatment

Some patients with ichthyosis are prone to recurrent fungal infections.  These individuals may  benefit from periodically taking an oral course of a systemic antifungal agent such as terbinafine.  It is helpful to discuss this option with your doctor.  It is also important in recurrent fungal  infections to check your fingernails and toenails. Thickened fingernails and toenails could be a sign of persistent fungal infection of the nails which may be spreading to other parts of your body and leading to this infection recurrence.   In cases of a fungal infection a quick in-office scraping by the dermatologist can let you know right away whether your skin is infected.

Recognizing Scabies

Lastly, scabies is a parasitic infection where mites invade your skin.  It is characterized by increased itching and scale.  Often patients have itchy bumps on their wrists, ankles, and waist line.  In severe cases the palms and soles become thickened.  Your dermatologist can do a quick skin scraping and make this diagnosis in clinic.

It is always important if you have areas of your skin that are not healing or worsening to visit your doctor and see if any additional test should be done.

 

 


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. www.mayclinic.com
*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. www.mayoclinic.com

Is Ichthyosis Ruining Your Wardrobe?

No matter what type of appearance challenges one may face, there is something we can all agree on – stepping into fresh, clean clothes, that are well fitting and soft to touch, can lift our spirits and boost our confidence.   However, finding those comfy, stylish outfits, and keeping those fabrics clean, can be a real challenge for those affected with ichthyosis.

As many of you know, the daily skin care treatment for ichthyosis requires the use of large amounts of emollients on the skin.  This, of course, is great for the skin, but can be very harsh on many types of  clothing. Not to mention, the beating taken by washers, dryers and, of course, the wallet.

Last week, Moe Wenik hosted a FIRST to Know conference call on this very topic.  The discussion was quite remarkable, as members were more than happy to share their ”trial and error” experiences and offer a host of new tips, information, products and resources. We even created a new “Laundry Care” Resource Sheet  with everything you’ll need to not only find and care for a wardrobe that fits with your personal style, but also…

…with your ichthyosis.

Any other laundry care tips?  Email mneville@firstskinfoundation and let us know!