Parent

Sickle Cell is in need of more Treatments

Did you know that 100 years after the first diagnosis of #sicklecell there are only 4 approved medications on the market to treat #sicklecelldisease? We need more treatments that are available for all ages.

All of the medications I mentioned above work to increase a patients fetal hemoglobin; however none of the medications treat pain crisis. We need a medication that will help stop pain crisis.

Although pain crisis are not the only complications attributed to sickle cell they are one of the hallmark symptoms of sickling in the body. Pain crisis right now are primarily controlled by opioids. The opioid crisis has complicated these treatments and many doctors and nurses often hold back when the meds are needed because of a lack of understanding and other reasons.

The community deserves to have a medication that will help them manage the pain affectively.

Treating Pain

When my daughter experiences pain out quick action steps are as follows:

Step 1. Hydrate. It’s very important to make sure SCD Warriors receive ample amounts of water and fluids to avoid dehydration.

STEP 2. Massage and ad heat. We massage the area and apply a heating pad to help.

STEP 3. Take pain medication. Doctors prescribe out Warriors medications and when they experience pain this is one of the first lines of defense.

STEP 4. Call the doctor. If the first 3 steps don’t reduce the problem, we notify the doctor to see what next steps we should take and if we need to visit the ER, the doctor will call ahead to inform the hospital beforehand that we are on our way so we won’t have to wait long to be seen.

STEP 5. Provide an element of distraction. My daughters likes movies that are uplifting to help distract her.

STEP 6. Try to identify the cause of the pain. When my daughter is ill I quickly begin to troubleshoot the problem and I ask a series of questions such as: Is it constipation? Is the pain because of extreme temperatures such as too hot or being too cold? Does the patient need rest? Is it an infection or virus? Finding the cause can help us identify the right solutions to the remedy the problem.

STEP 7. Last but not least, go to the hospital. This step will come soon if my child has a fever greater than 101 degrees.

Every Patient is different

Sickle cell is complex and what works for one patient may not work for the next. Symptoms and triggers may vary so it’s important to identify your own line of action and know what works for you and your family member.

Join the Conversation

I invite you to share this Sickle Cell is campaign with others.

  • Step 1. Download an image or video. Download images at (bit.ly/sicklecellis) and go to EXPORT to add them to your device. 
  • Step 2. Save it to your device so you can upload and share. 
  • Step 3. Add a caption and a minimum of these two hashtags: #SickleCell

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