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

Getting the Most Out of Summer Even With Sickle Cell

Posted by The Valerie Fund on 6/14/21 7:45 AM

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Summer should be about fun and having a good time for kids. They get a break from their routine and schoolwork and can finally relax - enjoy being a kid! However, for those kids battling sickle cell disease, summer brings with it certain risks. We want to share some tips on how to maximize your child's summer enjoyment without risking their health, a possible pain episode, or injury. 

Temperature extremes can make life very difficult for people with sickle cell disease. It is vitally important to take preventative steps to ensure your child (or yourself) does not endanger themselves or have an extreme pain episode or crisis. Most of the recommendations below are simple to achieve with some planning ahead and will ensure a great summer filled with the same activities as everyone else. 


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1. HYDRATE, HYDRATE, HYDRATEChildren with sickle cell anemia require an increased amount of liquids and are at a higher risk for dehydration. This need increases during the hot summer months and when a child is physically active.

Children should drink more fluids such as water or Gatorade. Encourage your child to carry a water bottle or go to a water fountain more often. It is also recommended that children avoid soda or juice, which can dehydrate the body and lead to an acute pain episode.



2. KEEP AN EYE ON TEMPERATURE SWINGS - Changes in temperature can lead to crisis episodes since people living with sickle cell disease have an increased sensitivity to cold (extremely cold air conditioning) and heat (extremely hot weather outside). Avoid your child from becoming over-heated in the sun by resting in the shade (under an umbrella or tree) and staying hydrated. Don’t forget a hat. Keep light clothing layers readily available for any changes in temperature – such as a cool, unexpected breeze when the sunsets. Before walking into an air-conditioned home, make sure to have a sweater to allow your body to adjust to the temperature change.


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3. SWIMMING THE RIGHT WAY - Swimming is a quintessential part of summer. But, it’s best to avoid cold pool water. Wear a wetsuit, which will manage your body’s temperature. Or, ensure the pool water is warm in temperature. Before swimming, children with sickle cell need to shower with lukewarm water prior to and immediately after swimming. When getting out, wrap yourself in a warm towel.


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4. TRAVELING THE FRIENDLY SKIES - When traveling by plane, the high altitude may cause a crisis. Take all necessary pain medication onboard. Walking the aisle and doing leg exercises (hourly) can help prevent leg blood clots. If needed, use a cane and ask for wheelchair assistance. Also, plan some rest days after landing at the destination to just relax.



5. THE AMERICAN PASTIME - While outdoor sports (baseball, volleyball, soccer, etc.) are loads of fun, these can lead to loads of trouble and a painful crisis if you don’t take precautions. Take frequent breaks, relax, rest and stay hydrated.

We hope you and your family are having a wonderful summer and can enjoy it to its fullest!

(This piece originally ran on The Valerie Fund blog in July of 2019. It is being republished here now due to the expected high temperatures this summer. SCD may require additional precautions to be taken but The Valerie Fund's mission has always been to help ensure a fun-filled and full life for our kids.)


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Topics: moms, sickle cell, caregivers, hematology, patients, nutrition

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