Scleroderma is an autoimmune disease that can change the way our skin, blood vessels, muscles work together. The disease can affect just the skin, but it may also affect other organs within the body. People with scleroderma may have areas of thicker skin, stiffness, and feeling fatigued.
We don’t know what causes the condition, but some hypothesize that it is an autoimmune abnormality that some people are born with. It is important to remember that it is absolutely not contagious. Certain genetic factors within family histories may make it more likely that your child will develop scleroderma; interacting with another child with it will not cause them to develop the condition.
Scleroderma is caused by the abnormal growth of connective tissue. This is a result of the body’s immune system attacking healthy tissues. Doctors can diagnose patients based on a person’s symptoms; sometimes they will also recommend a skin biopsy or blood test.
Scleroderma is something that happens in a body. It can change how a body’s germ fighters, muscles, bones, and skin all work together. Sometimes a person with scleroderma can get hardened or thicker skin. One way to be a good friend to someone with scleroderma is to play with them and treat them with kindness just like you would any other friend.
Scleroderma is a disease that affects the immune system (the cells that fight germs in your body) and connective tissues (muscles and bones in your body that hold other parts of your body in the right spot).
In an immune system that does not have scleroderma, the germ-fighting cells generally leave all of the healthy cells in the body alone, fighting only the germs, viruses and bacteria that get inside. In an immune system that does have scleroderma the germ-fighting cells (sometimes its fun to call these soldier cells or ninja cells when talking with a young child) get confused about what is a germ and what isn’t. In a body that has scleroderma, the germ-fighting cells can start attacking the healthy cells in those muscles and bones that help hold things together.
Sometimes people with scleroderma have skin that is thick or looks hard. Sometimes people with scleroderma look as if they have a scar or a deep line on their skin. Sometimes their fingers can look swollen or a different color. There are many different kinds of scleroderma and they can all look different. One way to be a good friend to someone with scleroderma is to ask them for permission before you question them about their skin. For example: “Would it be ok if I asked you a question about scleroderma?”
If you have a child with scleroderma and you are trying to help them formulate an explanation for peers or siblings, we would love to help, using details about their specific diagnosis and experience. Please reach out to us at firstname.lastname@example.org
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.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.