John was a perfectly healthy little boy until he was about 5 years old. He started to gain weight and have symptoms of early onset puberty. He had the proper tests and was diagnosed with Cushing’s syndrome which led to removal of his left adrenal gland.
John is a very fortunate young man who has the loving support of his family and through their determination to get a proper diagnosis for John he is rendered Cushing ’s free today.
The same determination that John’s family had in getting a proper diagnosis for him has also prompted them to promote Cushing’s awareness and to offer support to pediatric Cushing’s patients and their families.
Cathy Gifford, CUSH Secretary - Treasurer says "John is a fine young man... Remaining with Cushing's along with a host of other medical problems it's hard to always be positive. One day last week on one of my not so good days I was speaking to John's Mother on the phone. John insisted on talking to "Ms.Cathy". His Mom knew that I wasn't feeling well and that I was on my way out the door for an appointment, however I told her that I had time to speak to John for a few moments. He wanted to thank me for a card that I sent to him the previous week and to thank me for working on the brochure to "help kids with Cushing's". I've put endless hours into the CUSH organization and I've asked myself ocasionally when not feeling so well if what I do is making a difference and if I should coutinue. I got my answer the day that I talked to John....especially when right before he handed the phone over to his Mom he said "Hey Ms. Cathy, I love you" needless to say....John's appreciation is very genuine and I felt better for the remainder of that day from hearing the words of that child....children are amazing! "
Despite ongoing advances in surgical and radiotherapeutic techniques, pediatric Cushing's syndrome remains a diagnostic and therapeutic challenge.
Given that Cushing’s syndrome causes so many common medical problems such as hypertension, diabetes, and obesity it is possible that many patients with Cushing’s are undiagnosed for years or perhaps never diagnosed.
There is a need for more Cushing’s awareness in children as well as adults. Although not affiliated, CUSH was honored to recently “Unite Together” with JFCA for pediatric Cushing’s in the publication of a brochure.
Pituitary adenomas are the cause of Cushing’s in over 70% of adult patients. Adrenal adenomas, carcinomas, or bilateral hyperplasia are a more common cause of Cushing’s in pre-pubertal children. Pituitary adenomas are a more common cause of Cushing’s in older children. Ectopic source is rare in children. High UFC values can be caused by other conditions, such as physical and emotional stress, obesity, pregnancy, depression, etc. These conditions may cause what is known as pseudo-Cushing's syndrome. Although this is more common in adults, it is frequently seen in children.
Cushing's is relatively uncommon, affecting 10-15 of every million people each year, and most commonly in adults aged 20-50 years old; women account for over 70% of cases. Children account for about 10% of patients with newly diagnosed Cushing’s each year.
Symptoms of Cushing’s among children may include weight gain, decrease in growth rate, acne, headache, rounded face, reddened cheeks, excess hair growth on cheeks, arms, and legs, purplish colored stretch marks (more common in older children), darkened skin around neck and armpits, easy bruising, pubic hair at a younger than usual age, and high blood pressure.
It is important for children to be evaluated by a pediatric endocrinologist who is experienced with Cushing’s, since some of the tests require adjustment for the pediatric patient.