May is Ichthyosis Awareness Month.
“Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. Each year, more than 16,000 babies are born with some form of ichthyosis. A recent study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.” (Source: First Skin Foundation)
When your child is diagnosed with Ichthyosis, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Ichthyosis.
A person who has ichthyosis was born a bit different and has skin that is very very dry. While medicines and lotions can help their skin, it cannot make their ichthyosis go away. Skin with ichthyosis can be very sensitive, which means it needs to be treated gently. You cannot catch ichthyosis from another person.
One way you can be a good friend to someone with ichthyosis is to wash your own hands regularly to keep from spreading germs near their sensitive skin.
There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick or very thin. It is not contagious; you cannot catch it. It is something that a person is born with. This means it is safe to sit by, or hug, or high five someone with ichthyosis.
All of our skin gets new skin cells all of the time. Our old skin cells die and get brushed off and go away and new skin cells come to the top. In most types of skin this happens so quickly you can’t really see it. In skin with ichthyosis, it happens at a different pace so those dead cells can be more easily seen. Ichthyosis can sometimes cause skin to break more easily and can make skin more sensitive and more tender. This is why many times people with ichthyosis might choose to wear long sleeves or long pants to help protect their skin while they work and play.
Even though a person with ichthyosis might look red, does not mean that their skin is hurting (or have a sunburn) and even though their skin might look brown or flaky does not mean they are dirty. It is just one of the ways that their skin looks and acts differently from skin that does not have ichthyosis.
There are many different types of ichthyosis, but in general they are genetic conditions that impact the skin. This means that both the mother and father of a person born with ichthyosis were carriers of the gene. There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick (in some areas) or very thin (in others).
Our skin is our body’s largest organ and has very important jobs in our health such as protecting us from germs and regulating our internal temperature. People who have ichthyosis have to take special precautions and overcome challenges to protect their bodies from infection and overheating. There is no cure for ichthyosis but treatment includes keeping skin very well hydrated through ointments, medications and soaks.
A Children’s House For The Soul was honored to participate in the 2022 Chevron Houston Marathon! It was our first year as a run for a reason charity and we were so blessed with such a special opportunity! We had a team of over 10 half and full marathon runners, and 8 5K runners representing …
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.