“Jules has a sweet disposition, is a great friend, and an excellent student. She will stick up for what she believes in and does not feel as if she needs to follow the crowd,” said Julia’s mom, Jeni. Julia likes being with her friends, watching Netflix and playing Xbox. She is also a golfer and enjoys walking her dog. Julie is 12-years-old and has CANDLE syndrome.
CANDLE syndrome stands for Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated temperatures, and there are only 60 known cases. This condition causes Julia to develop “bumps” all over body, but they mostly affect her face and bottoms of her feet. These lesions can become as large as a golf ball and are tender to the touch. They can also develop in her muscles causing extreme pain and difficulty walking. There are no known cures for this condition caused by a change or mutation in a gene that causes cells in the body to malfunction. Fortunately, Julia only has one gene mutation, whereas most of the children diagnosed have two mutations, so their symptoms are far more severe.
School was tough for Julia when she was younger, with other children commenting on her ‘bumps‘. As she has grown up her mom said, “Her sense of self worth and self esteem have grown as well, and now she puts on a good front. She tells me ‘it’s my disease and I have to learn to deal with it.’ That is not to deny she still has some difficult emotional moments,” says her mom.
Fortunately, “Julia has a great group of friends, and her disease has not affected her socially. In some ways, because Julia has to deal with the challenges of her ‘bumps’ I feel as if she has learned to look at a person’s inner beauty and not judge people on their looks”, said Jeni.
Jeni believes attending A Children’s House for Soul conferences and camp during the summer has helped Julia grow and learn. She said they loved every minute of the Love the Skin You’re In conference in June, finding the activities to have a special impact for Julia. They also appreciated the photo session with Rich Guidotti.
“Sometimes, life seems so hectic and there isn’t time in your schedule to go to a conference or support meeting, but make time. The support, contacts and information is so helpful and I have found that Julia comes away from them with a bit more confidence and knowledge, as well as realizing she’s not the only person out there dealing with things,” said Jeni.
Would you like to be part of this uplifting, honest, and encouraging community? Please join us for conferences, camps, support groups, and Bible studies by registering today. Love the Skin You’re In today!
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.
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.