Welcome to our Growing Well Series!
Supporting Our Sickle Cell Warriors — All Year Long
As we continue to build a space rooted in education and community, I want to highlight a group that deserves our attention every single day: our Sickle Cell warriors.
While September is Sickle Cell Awareness Month and June 19th is World Sickle Cell Day, the need for awareness, understanding, and support doesn’t begin or end on these dates. For many families, sickle cell disease is a daily journey — one that impacts health, school, friendships, identity, and the transition into adolescence.
Why This Matters for Teens
Sickle cell disease (SCD) is the most common inherited blood disorder in the U.S., affecting about 1 in 365 Black/African American births and also occurring in individuals of Latinx, Middle Eastern, South Asian, and Mediterranean descent.
If you love someone living with SCD — or live with it yourself — you already know how deeply it touches every part of life. SCD can mean constant medical appointments, hospitalizations, and pain crises, but it also requires emotional support, community understanding, and advocacy.
At the same time, disparities in care still exist. Families may face bias, delayed pain management in emergency settings, or difficulty accessing specialists who understand the full picture of sickle cell.
For adolescents especially, SCD isn’t just a medical condition. It meets them at school, sports, friendships, and even puberty — including menstrual health.
Menstrual Health and Sickle Cell: What Parents Should Know
Menstruation can be a big adjustment for any teen — but for those living with SCD, it can add unique challenges. Some patterns we see include:
Periods may start later
Puberty can be delayed as the body devotes energy to managing sickle cell, so menstruation might start later than that of peers.
Menstrual cycles can trigger pain
Some teens notice increased sickle cell pain before or during their periods — sometimes severe enough to miss school or require medical care.
Heavier bleeding or anemia concerns
Many teens with sickle cell already struggle with anemia, and heavy periods can worsen fatigue, dizziness, or low energy.
Stronger or longer-lasting cramps
Painful cramps can add to the physical burden of SCD and may require individualized management.
Emotional and social impact
Managing sickle cell + challenging periods can feel overwhelming, isolating, or anxiety-provoking — especially when teens feel “different” from their peers.
Why this matters
It’s sometimes common to brush off period problems as “normal teenage stuff.” But for teens with SCD, changes in cycles, pain, or bleeding deserve attention — and can be a sign to connect with their healthcare provider to build a supportive plan.
How Families and Communities Can Support
- Listen — Take symptoms seriously and avoid dismissing pain.
- Document — Track cycles, symptoms, pain patterns, and triggers.
- Advocate — Encourage trauma-informed, bias-free care in clinical settings.
- Connect — Build a care team: hematology + adolescent gynecology or adolescent medicine/pediatrician/family medicine doctor + mental health support when needed.
If you’d like to learn more or support families living with SCD, please consider visiting:
Candice’s Sickle Cell Fund (www.candicessicklecellfund.org)– a community resource dedicated to awareness and support.
Every share, donation, and conversation helps shine a light and support the young people and families living with this condition every day.
A Final Word
Our Sickle Cell warriors deserve compassionate, informed care — not only during awareness months, but every day of the year.
Here in the Growing Well Series, we hold space for their stories, their strength, and the communities that stand with them.
Because advocacy isn’t seasonal — it’s ongoing.
Don’t forget to check out our Period Toolkit, designed to help teens track cycles and symptoms, prepare for doctor visits, and feel empowered in their care.
Dr. Gylynthia “Gyl” Trotman, MD, MPH
Founder, EverAfya