Wednesday, May 22, 2013

IAM: Learning by Sharing

I talk about the FIRST Foundation a lot. I am a huge advocate for this foundation and want everyone to know about it so we can help raise awareness to ensure the future of those affected, will improve. Improve with treatments, finding cures, educating others including doctors, connecting families affected and shining a positive light on those affected so their interactions with society are comfortable and accepting.

Educating others about Ichthyosis is important for many reasons. It gives a better understanding of what those affected go through on a day to day basis and how it feels to deal with different social situations. And by educating not only the average reader but medical professionals and doctors, who are unfamiliar with Ichthyosis and its treatments, will do nothing but improve the lives of those affected.

This post is about sharing. Sharing sites, blogs and personal stories to help with the education of Ichthyosis. Please take some time to learn more about FIRST, the genetics, research being conducted and personal stories. Please consider sharing this post inoder to help raise awareness by educating others.

As I am editing this post, I have to add Hunter's story which was featured on Inside Edition. Hunter is 19 and is affected with Harlequin Ichthyosis like Evan. She is an inspriation and has wonderful outlook on life. In her words exactly, "It's OK to be different; It's a part of life."Click here to see the VIDEO

Educational Sites/Blogs/Support:

Be sure to look through their site to learn more about Ichthyosis and their mission. Here are quick links for your convenience!!

This blog is absolutely wonderful. It is very educational in so many ways. From sharing personal experiences with Ichthyosis to detailing the genetics of Ichthyosis (for someone like me to understand it), to the history of Ichthyosis; this blog is full of information. Parents of affected children, one parent being affected herself, they have been huge supporters of the FIRST Foundation as well giving support to others with Ichthyosis.

This is a community of those affected by or caring for someone with Ichthyosis: to share, connect and support each other through the internet. Created by Melanie, this site has been helpful connecting others affected, as well as "trouble shooting" with ideas, opinions, or preferences of treatments, skin care regimens and dealing with society. 

Personal Blogs:

Carly is a magnificent individual. She is a blogger, writer, TV presenter and huge appearance advocate.  Her blog chronicles her journey in life while living with Icthyosis, Netherton Symdrome. For Ichthyosis Awareness Month Carly has been hosting guest posts of those affcted by or caring for someone with Ichthyosis. A MUST READ!
(photo courtesy of Carly)

Blessed by Brenna
Brenna is 16 months old and is also affected by Harlequin Ichthyosis, like Evan. We had the honor of meeting Brenna and her family when we took a trip out to Illoinos to their home. It was a delightful weekend and Evan and Brenna were super cute together. This blog is written by Courtney, Brenna's mom, and she does an great job of sharing her story while raising awareness for Ichthyosis.

LifeasUSdotcome: With faith that will move anything
Stephanie is a gorgeous Mommy-to-be and is the first woman, with Harlequin Ichthyosis, to ever be pregnant. Due any day now, Stephanie shares her story about her life living with a life threatening disorder, with a baby on the way, a loving husband and two happy dogs.

The Blarney's
Jessica is a wonderful Mommy to a precious little boy named Wyatt. Wyatt was a micro-preemie who is affected with the EHK form of Ichthyosis. Wyatt had a twin named Michael who was sent to heaven too early but I'm sure has been an angel watching over his brother. Wyatt is absolutely adorable and Jessica shares their story through this blog.


Monday, May 13, 2013

IAM: Looking Back

I turned 30 this past weekend. And all I can think about is the fact that the year I was born, babies with Harlequin Ichthyosis did not survive. Now, more than 50% of the babies born, affected with HI, survive. It is quite amazing how far medicine has come in just 30 years. I can only imagine how much more things will improve in Evan's lifetime. There is so much hope for better treatments and possibly one day, a cure.

All the more reason to support the FIRST Foundation. During the month of May, consider collecting some change at home, participating in the "It Makes Cents to Help FIRST" campaign. This fundraiser was created by the FIRST Foundation and I am participating in it during this month. Even if you only collect $5, it is $5 more dollars than we started with. I can send out labels for jars if you are interested, as well as information from FIRST. Contact me at

This week I wanted to share the posts from last year's Ichthyosis Awareness Month. Last year I focused on a different topic each week and feel it is worth reading again in honor of IAM. If you didn't read them last year then make sure you check them out now! Stay tuned for more IAM focussed posts throughout the month!

Ichthyosis Awareness Month: Week One: The Facts
Published on May 3rd 2012
This link includes the facts about Ichthyosis and Harlequin Ichthyosis

Ichthyosis Awareness Month: Week Two: My NICU Experience
Published on May 7th 2012
This is my story about Evan's birth and experience at Yale's New Born Special Care Unit

Ichthyosis Awareness Month: Week Three: Ichthyosis Education
Published on May 14th 2012
Details about Harlequin Ichthyosis and others living with it. Also includes sites where you can learn more

Ichthyosis Awareness Month: Week Four: Acceptance
Published on May 23rd 2012
My view and beliefs about acceptance and accepting the life I was given


Sunday, May 5, 2013

IAM: Ichthyosis Mommy Tips

This week I thought I'd share some "tips" for Ichthyosis parents, children or adults. Most of my tips obviously pertain to kids but I plan on posting tips from adults, living with ichthyosis, later on this month. If you have any tips pertaining to caring for Ichthyosis, PLEASE SHARE!! I am always looking for new and better ways to take care of my young warrior. With only three years of experience, this is all still very new and any tips would be appreciated!

Skin Care Tips: 
(Although I say "skin tips" this section is more of what I do for skin care. Be sure to CHECK WITH YOUR DERM before trying something new or something you are unsure of!)

-Baking Soda in the bath
     We have always used baking soda in the tub water. Our dermatologist told us that the higher the PH of the water the better it is for your skin. He related it to sea water as many of his patients have told him that their skin feels so much better after being at the beach. Typical tap water is around a PH of 5 and sea water is around a PH of 8. We use 1 tablespoon per gallon of water and I notice a big difference in Evan's skin when we do not use it (dries out/is flakier much faster).

     Ok, I know this is a no brainer but I have found Aquaphor to be the best emollient for Evan. I know different products work differently for everyone but it seems to last the longest. Lotions are not effective for Evan's skin so we literally need "straight up" petroleum. But Aquaphor has more than just petroleum to moisten the skin. Regular vaseline will work but it does not seem to last as long and find myself reapplying often. Also, we receive a free case of Aquaphor 4 times a year which covers almost half of what he needs right now. When Evan is older he will be able to decide what works best for him and what product feels best on his skin. I look forward to the future when Evan can incorporate some natural products to his regimen if possible. As much as Aqauphor is literally saving Evan's life I can't help but wonder how the use and exposure to the toxins of petroleum will affect him over time.

     This is something that everyone with Ichthyosis has to do. But what works for us, which may not for all, is the use of "cheap washcloths" (18 pack- Walmart $4) for exfoliation. We have tried many different exfoliating products (gloves, pumice stones, loof etc) but they all seem too sharp for Evan's skin. High quality wash clothes are too soft and do not work well for us. Skin to skin rubbing is also a gentle way to exfoliate especially when scrubbing with washcloths becomes intolerable.

     This is something that is absolutely NOT advised by our doctor. But it is something that we can't help and does help exfoliate Evan's skin. After coming to know Evan's skin better than the back of my hand, I know what I can or cannot pick. One of Evan's biggest problems is that his skin is growing so fast his body can't keep up with the shedding process. So anything I can help remove, that is not going to hurt him, will only help him. My husband is much more brave and does push the boundaries sometimes. But if we don't keep up with scale removal it will only get thicker and thicker and thicker...

-Hibiclens (antimicrobial soap)
     This is a must in our home and I'm sure in many homes. I only use this soap when I see something sucpicous on Evan's skin where a possible infection might be brewing. I will also use this soap on a fissured area or a cut to make sure harmful bacteria is killed and washed away. I try not to over use it as I want it to be most beneficial when appropriate.

-Cut hair short
     I know this is tough for girls but for Evan it is the easiest way to get the scales off of his head. Even though he does not have much hair at all, we shave what he does have so we don't pull on his hair as we try to remove scales.

-Avoid retinoids
     I know this is very hard to do especially with very scaly forms of Ichthyosis. Since I have been very fortunate to stay home with Evan, I have been able to do some intense skin care. I am the type of person that likes to avoid harmful prescriptions that have very harmful side effects. Luckily, Evan did not take oral retinoids at birth (when many HI babies do) because it make him very sick. We have Tazorac, a topical retinoid, which we rarely use. We try very hard with A LOT of 'elbow grease' to remove scales so perscriptions do not need to be used. But I am very glad they are available for when we might need them. I know it is very helpful for some but Evan will have to make that decision on his own when he is old enough.

     I still do not have a good grasp on this "tip" but usually, I will apply lots of Aquaphor to the area Evan is scratching. Any time he is caught doing this I immediately stop him but also check for a hair or fuzz which is usually the culprit 50% of the time.

-Cool down options
    This is something I still don't have a strong grasp on but I try to work it out.
    -Spray bottles are a necessity in the summer. I do not go anywhere without it.
    -Wet socks and a wet hat seem to help keep the body cool especially when outside.
    -Wet washcloths work well and help cool down.
    -I will freeze wet washcloths and let Ev play with it when he gets hot.
    -Old (clean) frozen teething rings to play with or rest on his body when in the car seat or stroller.
    -Ice packs are helpful in the car seat (covered in a blanket). Ev always heats up on a normal day by sitting in his seat so keeping his back cool is helpful.
    -Portable/handheld soft blade fans are great since they are not harmful when touched and can be held by young children without the worry of getting a cut. 
    -Baby pools or baby water tables are great cool down activities.
    -Cooling vests are used for many affected by Ichthyosis and we have yet to purchase one as I was hoping to get a size that would last the longest.
    -Cold Aquaphor- I still need to try this!
    -Obviously air conditioned rooms are a necessity rather than luxury for us in the summer.

***It is most important to avoid the summer heat between the hours of 10 am- 4 pm. Stay out of the sun, make sure you have the proper cool down procedures in place and stay hydrated.***

Laundry Tips:

     I use bleach on just about everything that goes in the wash for Evan. With infection at such a high risk it just eases my mind, KILL BACTERIA. I try to be as "green" as I can but when it comes to keeping things clean to keep my child healthy, bleach is the first chemical on my list. As it destroys colors, I tend to save one load for those favorite outfits. I do not use much, just enough to help clean.; about a tablespoon or two per load.

-Detergents free of dyes or perfumes
     Ok a little contradiction going on with bleach 1st on the list. I use these types of detergents for a few reasons. Many people are sensitive to smells, I know I am. So having very smelly perfumed cleaners can be nauseating especially on little baby lungs. Dyes don't really makes sense anyway. Why would you wash your clothes with dye? Isn't the point to get them clean? I avoid both in Evan's laundry but always add a splash of bleach to ease my mind.

-Use the HOTTEST water setting on your washer
     As Aqauphor is made up of grease, hot water will "melt" it away. I have a sanitizing cycle on my machine which uses very hot water. Our water heater is set at a very high temp to begin with (as it heats our house) so even out of the faucet, it is too hot to touch. This does help with the laundry as well as cleaning up Aquaphor around the house.

-Keep you machine clean
     On a regular basis you should run a few empty loads to clean out the machine. Aquaphor will build up in places you can't even see and will keep building up with the more loads you do. My machine has the added Bruli hair combined with Aquaphor which creates a yucky mess. I usually get the Tide washing machine cleaner. It's fragrance is very strong so I run 1 or 2 HOT empty cycles to flush it out. I throw something like dish towels in for the first load as the fragrance might still be sticking around. I wont put Evan's clothes in until the 3rd load or so. Front loaders can be tough to work with but no matter the type of machine you have keeping it clean and "aqauphor free" will lengthen its lifetime.

-Spray & Wash w/ Resolve
     I found this to be quite helpful for your own clothes. Aqauphor stains everything! And this product seems to work the best. It may take more than one wash and all fabrics are different but there hasn't been an Aquaphor smear I couldn't get out. Though Aquaphor stains don't bother me much, this product works great for that really special shirt or outfit.

Other tips:

-Keep an "emergency" kit in your car
     You never know when you might get a flat tire, get into a fender bender or forget the diaper bag. Always make sure your phone is charged up and keep a small container of necessities in the car if the need arises. Items I include are : a few diapers, tube of Aquaphor, baby wipes, bacitracin, mini first-aid kit,  unopened bottle of water, snack, a change of clothes, small blanket, hat, hand sanitizer, clorox to-go wipes (NOT for skin), spray bottle and emergency ice packs. This kit changes with the season and will include a winter blanket, warm packs or a sweater. You don't need to go overboard (though I tend to!) but you can never be too prepared, especially for children like ours.

-Keep some necessitates in your purse
     This is the purpose of a purse right? I always keep a small tube of Aqauphor, hand sanitizer, paci wipes and a snack in my bag. Half of this list would be in my purse anyways just for me! I usually don't bring the diaper bag into the store if it's a quick trip but may end up needing something while we shop.

-Car starter
    Who doesn't want a car starter??? I do not have one but would absolutely love one! Not to use it as a luxury item but as a lifesaver. One of the most frightening tasks is being out in the summer heat. I do my best to avoid the "hottest hours" but sometimes it is inevitable. And even on a cool summer morning the car still heats up quick. Ideally, if I had a starter, I can start the car form the store's window and have it cool down before we head out into the heat. As overheating is one of Evan's most dangerous risks, a car starter can be very beneficial especially in the summer.

-Car seat cover
     Aquaphor gets everywhere. And one of the hardest things to clean is the car seat. Though most car seats upholstery can be taken off and washed, it is a hassle and has to be planned out perfectly. Some car seats are "spot clean only" which is a nightmare when dealing with Aqauphor stains. Lucky most baby product companies have created covers which can easily be wiped down. In the winter, cleaning Aquapor is not as much of a concern as Evan is bundled up. But in the summer, in short sleeves and shorts, those legs and arms smearing Aquaphor everywhere creating breeding grounds for bacteria, Yuck!

- Lots of clean stuffed animals
     Stuffed animals are breeding grounds for bacteria. After one swipe of an Aquaphored face or hand leaves a reservoir of germs to cling to. Having an abundance of clean bears, dogs and bunnies to cuddle is a necessity for us. Luckily, Evan is not attached to one specific animal which makes it easier. If that is the case with your child, stock up on that special stuffed animal to have clean ones on hand!

-Baby wipes
     I use the all natural wipes as anything with alcohol can be drying or painful to Evan. The natural wipes are great because not only do I use it when changing him but they can be used to wipes his hands and face after a snack or meal. I keep a package in my car, obviously the diaper bag, and at my fingertips at home.

     These are perfect for those public outings when you need a quick sanitizing. When I travel with Evan I used these on the plane to wipe down the arm rests, windows and tray as I knew he would be touching it (and I can't imagine the amount of bacteria that can collect up on these surfaces). I try to avoid changing Evan in public but when I have no choice I use lots of wipes to clean the baby station and anything he may possibly touch (then put down the diaper pad and blanket). The Clorox-to-go packs are convenient and small enough to fit in your purse.


Happy Spring!!!


Wednesday, May 1, 2013

Ichthyosis Awareness Month 2013: The Facts

Wow it's May already. May is probably my favorite month of the year. It has the perfect weather, my birthday (this year the big 3-0!), mother's day and memorial day. It's the time of year when school starts to wrap up and summer is ready to begin. Now, I have more of a reason to celebrate this month, to raise awareness for Ichthyosis and the FIRST Foundation.

I am very grateful to everyone who has helped with my fundraisers by donating and raising awareness. It really means a lot to have all of your support and determination to help educate others. This year "It Makes Cents to Help FIRST" is back and running for the entire month. If you would like to participate please contact me at Feel free to collect some change at home, even it if adds up to $3. Every penny counts! And help raise awarness by 'Liking' the FIRST Foundation's Facebook page. Like and share stories to help make this Ichthyosis Awareness Month a success!!!!!

Stay tuned all month long for special posts regarding Ichthyosis. There is a lot going on in our Ichthyosis community and I will be sharing links to all the other great posts and videos created by other bloggers and Ichthyosis advocates. Be sure to check back soon!

Though a repeat from a post last year, the facts are still the facts....

Here are some facts about Ichthyosis:

There is no cure for Ichthyosis.

Ichthyosis affects people of all ages, races and gender.

Ichthyosis is not contagious. It is caused by a genetic mutation in 1 of 40 genes that make up the skin.

- Ichthy comes from the Greek root meaning fish.

Some form of Ichthyosis affects more than 16,000 babies each year.

There are more than 28 forms/types of Ichthyosis.

Hearing and vision impairments are associated with those affected by Ichthyosis.

Ichthyosis Vulgaris is the mildest and most common form, accounting for about 95% of the cases.

Serious medical complications are associated with most forms of Ichthyosis including dehydration, infections, blistering, overheating, and rapid calorie loss.

The FIRST Foundation is the only patient advocacy organization in the country funding research for a cure.

Facts about Harlequin Ichthyosis:

Harlequin Ichthyosis (HI) is very rare and the most severe form of Ichthyosis.

HI affects maybe 1 in 1,000,000 people.

Each parent has to be a carrier of the mutated gene but show no signs of Ichthyosis.

An HI infant is born with plates of skin that crack and split apart leaving the body susceptible to life threatening infections.

At birth, the eyes and mouth are forced 'inside out' due to the tight plates of skin.

The ears of an HI infant may appear to be misshapen or missing, but are fused to the head by thick skin.

In the past, this disorder was always fatal but due to improvements in care it is now possible for an HI infant to survive.

According to US National Library of Medicine, currently only about 56% of the affected babies survive the neonatal period.

The oldest person living with Harlequin Ichthyosis is 29 years old.