What it feels like to have scid trial#

“I remember signing the papers and thinking if this can help other kids, then I definitely want to do it, and if it doesn’t work, we’ll try something else,” she said. Kisik recalls being afraid of joining the trials but also understanding that she could be contributing to the greater good.

What it feels like to have scid trial#

In 1990, at the age of 9, Kisik and her family agreed to participate in a clinical trial gene therapy treatment for ADA-SCID at the National Institute of Health (NIH), in hopes that it would be a more permanent solution to alleviate the ADA-SCID. Still, ERT, which requires weekly intramuscular injections and can have side effects, is not a long-term treatment for ADA-SCID. Kisik entered clinical trials for enzyme replacement therapy (ERT) – which eventually gained FDA approval – and her health improved. ADA-SCID is the second most common type of SCID next to X-linked SCID. This harmful substance kills immune system cells.

A person with ADA-SCID lacks the ADA enzyme, which is necessary to prevent the build-up of a toxic substance called deoxyadenosine. Doctors performed surgery to drain the infection and prescribed intravenous antibiotics at home for four weeks.Ī subsequent referral to an immunologist at Rainbow Babies and Children’s Hospital revealed the source of Kisik’s health problems – ADA-SCID. Doctors discovered that an infection in her sinuses had traveled through her blood to one of her hip joints, causing a severe hip infection. The turning point for her diagnosis occurred when Kisik was about 4 years old and came home from school limping. Neither doctors nor her parents could figure out why she constantly developed infections, particularly because her lymph nodes were never swollen. Cindy Kisik celebrates a birthday during a time when she struggled with infections due to SCID.Īt the root of her deep interest in mental health is Kisik’s experience juggling her diagnosis and subsequent treatment (which garnered worldwide attention) while simply trying to live her life as a child and teen.īorn on July 6, 1981, to Susan Cutshall, a nurse, and William Cutshall, a respiratory therapist, Kisik developed pneumonia six times during infancy and early childhood and landed in the hospital for a month due to chicken pox. “It’s probably one of the things that I am most proud of,” said Kisik. As part of her job, she created a kid-friendly activity book that introduces children to mental health challenges and explains how it’s not their fault, and that they should talk about their emotions and feelings. Kisik works part-time for the local chapter of the National Alliance on Mental Illness (NAMI) in her hometown of Stark County, Ohio as an outreach coordinator.

While Kisik received a lot of attention as a child and young adult for being the second person in the world to receive gene therapy to treat adenosine deaminase severe combined immunodeficiency (ADA-SCID) and she is happy to share her rare disease story, these days she is more focused on being an advocate for mental health. “Your mental health is just as important as anything else and you won’t be able to help others unless you help yourself,” said Kisik. Cindy Kisik enjoys time with her nephew Riley.

Don’t let your problems fester, and don’t be embarrassed to ask for help, she says. She tells them not to be ashamed if they feel sad or anxious, that’s it’s normal, and there are people in the community who want to help. Cindy Cutshall-Kisik visits youth of all ages – from preschool to college – to share the importance of addressing mental health needs.