Mahwah Patient Support Forum - 2013

Mahwah, New Jersey
August 3, 2013 ~ Doubletree Hilton Hotel

The Skinny
Hot Tips Learned at the Patient Support Forums!
  • Keeping a journal of “solutions” will help to establish a permanent routine.
  • Bleach – Some participants agreed that a simple bleach bath is effective for some types of ichthyosis, as a skin softener and for bacteria and odor control.  Although the precise measurement of the mixture varies from person to person, it is recommended to use approx. 1 to 2 teaspoons per gallon of water.
  • P & S Liquid by Baker Cummins Dermatologics – This simple and inexpensive ointment is highly recommended for loosening and removing scalp scale.
  • Virgin coconut oil is natural moisturizer and disinfectant and highly recommended by some of the attendees (cost effective too!).
  • Pedi Wands can be found in most beauty supply stores and can be great for getting to those hard to reach areas! (Pedi-wand is a pedicure wand).
  • Switching from lotion in summer to ointment in winter can be an effective way to keep skin moist, smooth.
  • Frogtog – In addition to cooling vests, this product is recommended as an easy-to-use neck wrap and great for beating the heat. (available at Walmart)
  • True Blue Morrocon Oil from Bath & Body Works – Recommended by a few female members as both a sunscreen and a lotion, with a light feminine fragrance.
  • SPF 15 offers 94% of UVA protection; SPF 30 offer 97% protection, however, sunscreen brand is really an individual choice.  Fragrance, consistency, price point etc., are truthfully the deciding factors.  (FYI - there is also a significant price difference in “children’s sunscreen”, but it is, in fact, the same ingredients.)
  • Salt vs. Chlorine - If you are prone to infection, chlorine pools may be helpful However, for dryness, salt water pools have been reported to help as well.  Once again, trial and error will be your best way to assess the best treatment for your condition.
  • Remember, creams and lotions are a personal preference. Ask your child directly, what lotions do they like?  This will help guide what is working for their particular condition.
  • Some moisture creams sting less than others. Over the counter petroleum jelly is still a popular alternative following a bath, and some members have not had the need to even try other products.
  • “Body conditioner” was recommended by one of the teen attendees to smooth and soften skin.
  • For exfoliating the scalp, one dermatologist highly recommended the “Tangle Teaser,” a comb from the UK
  • Shea butter, mixed with lotion, is popular and inexpensive choice for moisturizing.
  • Dawn dish detergent is a great additive to the laundry - with the regular detergent, add a squeeze in the washer.
  • Retinoids - Medical experts strongly encourage that patients discuss the side effects at length with your doctor, so they are fully aware of the risk factors, before considering any type of retinoid treatment.
  • Bathing - Making time for a longer bath – up to 60 minutes if possible - is a very effective way to manage skin condition, and keep it as clean and smooth as possible.
  • Individuality - The overwhelming consensus of all three events, was that treating ichthyosis is often an “individual preference.” There are many ways to treat ichthyosis and it is likely that most will need to conduct a period of trial and error – testing new product, new routines – to find what works best for you.
  • Ask Your Doctor - It was also noted several times throughout the forums, that when starting a new a routine, or trying a new product – it is imperative to consult your doctor so that together you can create a plan that will work with your particular type of ichthyosis.

On August 3rd FIRST held a Patient Support Forum at the Doubletree in Mahwah, New Jersey.  The gathering was well attended with a total of nearly 30 members and medical professionals filling the room. Dr. Leslie Castelo-Soccio of Children’s Hospital of Philadelphia, and Dr. Keith Choate and Dr. Brittany Craiglow from Yale University were the medical experts in attendance. And, it was a first for FIRST, as our communications director ventured into the real-time technique of live blogging from the forum. If you were unable to attend you will find our live blog at blog.firstskinfoundation.org.

 





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