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
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.
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.
Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.
We should not shelter our children from our disappointment. While it is natural to have this desire, it is not a good idea to want to keep them from knowing that we, as adults, sometimes have “bad” (i.e. not the most fun) feelings.
In February we launched a reboot of our #Iwasmadeamasterpiece social media campaign from this summer with a fun valentines themed twist.
As part of our birthday surprise, A Children’s House for the Soul announced the launch of our public capital campaign to buy 1972 W. Dallas and renovate the space into the first ever community building dedicated to the social, emotional and spiritual support of children with chronic skin conditions/birthmarks and their families.
The 2020 Camp Dermadillo Reunion was a great success! We had more than 60 friends new and “old” come to Speedy’s Fast Track for a great day of go-kart racing, mini golf, laser tag, arcade games and more.
Love the Skin You’re In Family Day 2019 is officially in the books! We had a great time and learned a lot and I am so grateful for the wonderful day!
As the month of November is upon us, I know we are all going to begin reflecting on what we are thankful for, and secretly looking towards the new year thinking of things we hope to come. I just wanted to write you a letter to thank you, Skin, for all the ways you’ve been there for me and shaped me as a person. I never really stopped to think about it before, but in a way, you have made all the difference.
We are so thankful to Joyce and Leah for both sharing their story about Leah’s eczema.
While eczema can seem common, it takes on a lot of different forms. Also, many people don’t understand how much pain and discomfort can come from eczema. Here are a few ways to explain eczema to different ages.
Hello, my name is Megan and I have alopecia. It is alopecia awareness month and I would like to share my story. The basic description of alopecia is that hair falls out in patches, or total loss of hair on the scalp or the body. Alopecia is different for everyone, and for me, I went through different stages.
Alopecia areata is a common autoimmune disorder that often results in unpredictable hair loss. It affects roughly 6.8 million people in the United States.In the majority of cases, hair falls out in small patches around the size of a quarter. For most people, the hair loss is nothing more than a few patches, though in some cases it can be more extreme.
In honor of National Alopecia Awareness Month, one of our Mom’s is sharing her and her daughter’s path over the last 10 years since diagnosis. Thank you Stacy for sharing your family and your faith with us!