When Valerie Goldstein lost her battle to cancer at the age of 9, her parents Ed and Sue vowed to help families in similar situations gain easier access to more customized care.

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The Valerie Fund supports comprehensive health care services focusing on psychosocial programs for children with cancer and blood disorders close to home.

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Supporting children with cancer and blood disorders since 1976


The Valerie Fund Blog

Back to School Tips for Kids with Sickle Cell Disease

Posted by The Valerie Fund on 9/3/19 9:00 AM

Back to School

The month of September means two things: it is National Sickle Cell Awareness Month and it's time for back to school!

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Each September we take the time to observe National Sickle Cell Awareness Month in an effort to bring to light the effect Sickle Cell Disease has on both a child and their family. It is important to remember that Sickle Cell is a chronic condition that must be continually managed as it cannot be cured. 

While children and parents might have a slightly different reaction to the idea of “back to school,” it is definitely a time of change for everyone. The idea of a new adventure and a new schedule can be both exciting and scary for everyone but when dealing with Sickle Cell Disease, many parents can be overwhelmed with worry, anxiety, and stress. here are some strategies that parents, children, and teachers can work on together to ensure a healthy and productive school year.

➢ Give lots of fluids.

○ Fluids help red blood cells move more easily throughout the body which is vitally important for our kids. This can reduce the number and frequency of pain flare-ups he or she has.


○ Allow the student to keep a water bottle at their desk so they can stay hydrated throughout the day. This is doubly important during gym class or any period of extra physical activity. Remind the child to keep drinking throughout the day so they form good habits.

➢ Allow for extra bathroom privileges.

○ Regular fluids will eventually mean regular trips to the bathroom. It is important to keep the child’s kidneys as healthy as possible as the Sickle Cell Disease (SCD) could keep them from functioning at their optimal level. Allow the student to go to the restroom as needed.

➢ Avoid excessive physical exhaustion.

○ All kids love to play in one way or another and some enjoy more physical activity than others. While it may be hard to prevent a child from playing the game they want or joining in with their friends, children with SCD can tire very easily due to the blood circulation. Make sure the student is able to rest during periods of high activity and be aware if the parents do not want the child to participate at all. If this is the case, the student should be excused from the activity.

➢ Be wary of extreme temperatures.

○ Children with SCD should stay out of the extreme cold whenever possible in order to avoid a pain flare-up. Leaving a sweater or sweatshirt in school for the child to grab when necessary is an easy way to help avoid the cold. On the
opposite side of the thermometer, excessive heat could become a dehydration issue so drinking extra fluids becomes especially important.

➢ Accommodate for missed days of school

○ Whether it be doctor visits or longer hospital stays, students with SCD will most likely be missing more than the average number of days of school. When possible, the parents and teachers should work together and plan accordingly so the student is able to make up any learning around missed days from school. These are also great opportunities to talk with the rest of the class to make sure everyone is supportive and that the child is treated equally and fairly.


➢ Be prepared for emergencies.

○ The Boy Scout’s old adage is always a good one but never more so than when working with children - “always be prepared.” While you can plan for many possible issues like we have just gone over, always be aware that you can’t
prepare for everything. There may be an emergency or extreme pain flare-up at the worst moment. Be sure to have an emergency plan in place and that the parents, teachers, nurse, administration, and student all know what to do.

The ultimate goal is to provide the student with as an enriching and rewarding educational experience as possible while still dealing with the reality of Sickle Cell Disease. While there are certain accommodations that should be taken for everyone’s benefit, it is always best to maintain as much communication as possible. Working together, everyone can help make the day to day as enjoyable for them as possible.

For more information and further resources, The Children's Hospital of Philadelphia Sickle Cell Center has created an outreach program. You can click here to read further.




  After their nine-year-old daughter Valerie succumbed to cancer in 1976, Sue and Ed Goldstein were determined that no      family should have to travel great distances to receive state-of-the-art medical care. Today, more than 6,000 children with    cancer and blood disorders benefit immeasurably by receiving their medical treatment close to home in a child-centered      environment. The Valerie Fund ensures they do not have to rely on insurance reimbursements to receive a range of            customized therapeutic services that enhance their quality of life. For more information, please visit                                        www.thevaleriefund.org. 

Topics: Blood Disorders, moms, sickle cell, awareness, hematology, patients

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