Delayed puberty and other sickle cell challenges that aren’t widely discussed

Previously, I’d never publicly shared my experiences with delayed puberty and how deeply it affected me. Looking back, I realize that it was an important part of my journey with sickle cell disease (SCD). I hope my story will help young warriors and caregivers understand this often-overlooked complication and remind them that they are not alone.

I didn’t know I had SCD until I was 11 years old. Before then, I simply wondered why I was the only child I knew who was sick often and took medication every day. Learning my diagnosis brought relief because I finally understood why my childhood had been different. Everything changed when I finally learned the truth.

But my biggest worry wasn’t about the condition itself, or even the tuberculosis I developed later. Instead, what troubled me was that my body had seemed to stop developing.

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My story

My breasts first began to develop when I was about 10 years old. I remember wearing a T-shirt and tying it tightly around me because I wanted my siblings and aunties to notice the small changes. As soon as one of my aunties commented on it, everyone else did, too, which is what I had hoped would happen. I was excited that my body was changing.

For a while, everything seemed normal. My breasts continued to gradually develop, and I assumed puberty was progressing as expected.

Then, at 11, I got tuberculosis, and my breasts completely disappeared. I was devastated and didn’t understand what had happened. Thankfully, my family reassured me that they would eventually grow back.

But after a year of treatment for tuberculosis, nothing had changed. Every birthday came with fresh hope. But by 14, still nothing.

They finally started developing again when I was 15. I was overjoyed. Although they were still small, I immediately asked my aunt to buy me my first bra. Most of my friends and even younger girls were already wearing bras, so reaching that milestone meant a great deal to me.

Fortunately, my menstrual story was different. Some people with SCD experience significant delays, but that wasn’t my experience.

At the time, I never worried about menstruation because I didn’t know that delayed puberty could affect it. My mother, however, quietly carried that burden for both of us.

As a church leader, she had met many mothers whose daughters with SCD didn’t start menstruating until their late teens. She feared I might face the same challenge but never shared those worries with me. Instead, she prayed privately and trusted God while shielding me from the anxiety.

I eventually had my first period a few months before my 14th birthday. When I told my mum I had started my period, she was joyful and immediately thanked God. She then told me about the fears she had kept hidden from me all those years.

Today, I understand that delayed puberty is one of the common complications of SCD during adolescence. Still, many families are unaware that it can happen until they experience it firsthand. That is why honest conversations between healthcare providers, parents, and young people are so important.

Many healthcare professionals reassure families that children with SCD usually catch up with puberty later, which is often true. But newer research suggests that delayed puberty in boys may be associated with an increased risk of reproductive abnormalities later in life. Therefore, persistent delays shouldn’t be ignored.

If your child with SCD shows signs of delayed puberty, it’s important to speak with a hematologist. They may refer you to an endocrinologist or other specialist for further evaluation. Early assessment can identify treatable causes and improve long-term outcomes.

Disease-modifying therapies, when appropriate, may also help support healthy growth and development. (Always talk to your doctor before starting or stopping a treatment.) Likewise, good nutrition, taking routine medications as prescribed, attending regular clinic appointments, and maintaining consistent specialist care all play important roles.

Most importantly, remember that every child develops differently. Delayed puberty can be frightening, but it doesn’t always mean something is permanently wrong. Seek medical advice early, ask questions, and work closely with your healthcare team. Early support can make a meaningful difference for both children and their families.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.