Freshman Isaac Barchus has dealt with CANDLE Syndrome his whole life yet constantly has a positive attitude. CANDLE Syndrome stands for Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated temperature. This means Barchus has major damage to his tissue, joints and muscles and his heart.

“Basically, I lose all my fat and that is why you can see my veins,” Barchus said. “That is also why I am super short. I usually hide it a lot when I’m in school because to me, pain has to be super bad for me to actually freak out about it.”

Because of his disease, Barchus said it causes him to be behind in school.

“This semester I have missed 152 classes, and writing is really hard for me because of my disease,” Barchus said.

Barchus said that even though he has this disease, it has not stopped him from making friends. He has had supportive, close friends, that have been by his side since he was in second grade.

Barchus said if he could give advice to anyone with the disease, it would be to communicate with others.

“Just talk to people,” Barchus said. “It is always easy to do in a school with 2,000 kids in it and you can easily make friends.”

There are many different varieties of CANDLE Syndrome, however, Barchus said he is the only person in the entire population of this disease with this specific mutation of it is called PSMB4. Due to this, he has had to have a team doctors his entire life. He travels to Bethesda, MD to receive care.

“The reason I go back to the National Institute of Health [NIH] is because they basically saved my life when I was little,” Barchus said. “If it weren’t for them, I would probably be dead.”

Army Lange, Personal Care Nurse, assists Barchus around school. She helps him get from class to class. Lange said that Barchus’ personality is what makes her job enjoyable.

“He’s got a good personality, he’s always upbeat, he’s always got a positive attitude which makes it much easier to come to work,” Lange said. “He is just fun to be around, so he makes my job enjoyable and not a whole lot of work because he doesn’t give me too much attitude.”

Freshman Kyle Vincentini is friends with Barchus and feels the same as Lange about Barchus’ positive attitude.

“My favorite thing about Isaac is his positivity,” Vincentini said. “I know that he doesn’t have it easy going through what he goes through, but he’s never in a bad mood and he is always super positive around everybody.”