Adolescence is a time of change – changing bodies, changing emotions, changing friends, changing lives. All of these changes are part of puberty, caused by increased levels of testosterone (the male sex hormone). But for most young people living with Duchenne and taking steroids, these changes are delayed. Not going through puberty at the same time as your peers can be extremely distressing.
While delayed puberty is often a concern of teens and young adults living with Duchenne, many families have told us that the topic is not widely discussed, evaluated or treated by their medical providers. Why is this? Well, people with Duchenne may find this topic too uncomfortable to bring up, and may be hesitant to discuss their concerns with their providers. Additionally, providers may be uncomfortable bringing it up with their patients or may be unaware that they should be assessing and treating delayed puberty in people living with Duchenne.
Experts agree that pubertal development should be assessed yearly starting at age 12 (either by your primary care provider or neuromuscular team). If there are no signs of pubertal changes by age 14, you should be referred to an endocrinologist (a doctor that manages hormones). The endocrinologist will evaluate whether you are starting to go through puberty. If you are not, and it is determined that puberty is delayed, the endocrinologist should discuss the pros and cons of treatment with supplemental testosterone with you and your parents. There are many benefits to assisting pubertal development with testosterone, including improved emotional, psychosocial and even improved bone health!
To help us to have the most current information on Puberty and Duchenne, Dr. Robert Benjamin, a pediatric endocrinologist from Duke Children’s Hospital and Health Center, joined us for a webinar discussion last week. Topics covered in this webinar included: what is normal puberty, the impact of steroids on puberty, what is delayed puberty, and how delayed puberty can be treated.