“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.
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