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Archive for November, 2013

You are not Alone.

It is the season of reflection; a time to pause and embrace all of the lessons, gifts, and opportunities the past year has brought into our lives, and into the lives of those around us.

And it never ceases to amaze us here at the FIRST office, how many lives are affected, changed, or have even been transformed, when affected members find solace in the experience of another affected member. Perhaps it’s just the simple knowing that someone out there is listening, and at a very deep level, truly understands your situation.

Social media is making that possible every single day.  Members are seeing the value in engaging in daily conversation with those who walk in the very same shoes. In fact, without these online social groups, many people have never had the opportunity to connect with anyone else that has ichthyosis.

Sometimes the discussion focuses on a unique issue, like starting a new relationship, or dealing with the social difficulties brought on by skin shedding, or alopecia  – or maybe its a topic that most feel uncomfortable discussing, like how to inform co-workers of your skin condition, or meeting  a roomate for the very first time. (A FIRST staff member oversees conversations in each group, and if there are questions or concerns that arise that require our input, we are more than glad to join the discussion.)  Other times, social media groups offer a simple way to check in and say “Hello, I’m here and glad you are too,” or to post a photo of something spectacular; a simple connection that warms the often icy feelings of struggling with ichthyosis all alone.

At this time of Thanksgiving, we are grateful that so many people have discovered the many valuable resources available at FIRST. It is very validating to our staff, board, and volunteers, and continues to assure us that we are involved in a mission that is making a real difference in the lives of others.

But there’s something more.

We’re so delighted that so many of you are bravely answering the call to not only educate and inform yourselves as much as possible, but to share your experiences, your thoughts, and your personal stories of living with ichthyosis, with those who have reached out and expressed the need for connection. Please accept our bottomless thank you for reaching back.

If you haven’t done so already, we encourage you to find a FIRST Facebook group that speaks to your particular stage in life.  FIRST Facebook groups include: Adults with IchthyosisYoung Adults with Ichthyosis (18-30), Parents of Children with Ichthyosis, or Teens with Ichthyosis - and they are all currently accepting members. Additionally, we are excited to share the news that these groups have been engaging in spirited and supportive conversations daily, since the very first day they were created.

So join the conversation, meet some friends, and, hopefully, gain some much needed support, tips, and information along the way.

Have a safe and happy holiday!

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