Meeting People in a New Way
I met about 34 new FIRST members over the past few weeks. OK, maybe using the word “met” is an exaggeration, but in my own way of social thinking I feel like I met them. Even though I didn’t see their faces, I heard their voices and, more importantly, I heard their need to talk to one-another. I am making reference to the FIRST to Know calls hosted this month; one for families with lamellar, and the second one was for Netherton syndrome families. These calls were buzzing with excitement because many people had never talked to other ichthyosis families prior to the call. The lamellar call had 28 callers on the line. Not everyone was talking, but certainly they were listening. The Netherton syndrome call was more intimate with 6 families calling in. Although, the types of ichthyosis are different, the calls proved to be very similar. The same question was asked, “What Works”? Product discussion was a large part of both calls, as the callers shared interesting products which they have found helpful.
What works best? Not one particular product, but some of the callers shared success in using Shea Nut Butter, Dead Sea Salt, Aveeno Crème (blue label) and compounds, which must be compounded at a pharmacy. Aquaphor is still widely used by many of our members, and some callers had just learned about the free program Beiersdorf so generously sponsors (which is why the FIRST to Know calls are so helpful).
Tips for ears? See your ENT regularly to clean out the scale. Callers recommended using a few drops of vinegar in the ears prior (3 days) to visiting the ENT, this helps to loosen the scale and wax. Another caller recommended Hydrogen Peroxide drops in the ears as well. And of course – never stick objects in your ears!
Tips for eyes? It is important to keep eyes lubricated; and to avoid damage to the cornea. Try using Vaseline-based ointments for the eyes during the day time, and a water-base product for the evening.
Our callers had discussion about exercise and what type they can participate in. The only consensus on this topic was that overheating is the biggest challenge. It is important to find what works best for each individual. Yoga was mentioned as a form of exercise that works well with affected individuals. In an earlier blog post, Terry M. wrote about her positive experience with yoga and her improved flexibility.
It was reassuring to hear parents encouraging their children to participate in the activities that interested them, and how they learn to manage overheating. When asked how parents know their child is too hot, some of the parents said they follow the signs their children give them. They also recognize that there are times the child can’t go outside. The most interesting part of the discussion was that parents don’t limit, or restrict their children. This is a wonderful lesson from very experienced parents.
Wonderful feedback was sent to FIRST after the calls, with the number one feedback: asking for more calls! The FIRST to Know series continues with calls scheduled for XLI, EI, Teens, and Aging Skin. Additional calls will be added for specific topics as well. Call announcements will be posted on the Facebook page and our website. I hope you consider calling in; I can’t wait to “meet” more FIRST members!
A huge thank you goes out to the physicians on the call, Dr. Mary Williams, Dr. Gabi Richard, and Dr. Phil Fleckman; with their expertise, we were able to get excellent medical advice!
Both of the calls were recorded. If you would like to listen to a recorded call, please email me at firstname.lastname@example.org.
FIRST disclaimer: We don’t endorse or recommend any of the products or skin care tips. We encourage you consult your dermatologist for treatment advice.