Sickle Cell Disease

Hope For Adults with Sickle Cell #30forSickleCell


St. Jude Children’s Research Hospital is one of the institutions at the forefront of sickle cell disease (SCD) research. The hospital does clinical research at their facility in Memphis, TN. Then they transfer their findings to help healthcare professionals around the world offer better care to children and more hope for adults with sickle cell. I mentioned, in my post “New State of Sickle Cell 2016 Report” that my greatest concern parenting a child living with sickle cell disorder is learning how to cope with the long-term effects that sickle cell has on the body. I am extremely concerned about how their care differs when they move from pediatric hematology, into adult care. Ideally, a patient will have the same Hematologist throughout their childhood who understands their medical needs as it relates to their personal long-term history.

Thus, the consistency of medical care throughout childhood will help physicians give better personalized care. However, when a patient grows, the disease gets worse. Unfortunately, it is at this same time patients are generally required to get a new doctor who is not as familiar with his or her unique medical situation.

We need more hope for adults with sickle cell #30forsicklecell

Moreover, St. Jude Children’s Research Hospital is helping make a difference by following patients with sickle cell as they transition into adulthood. This type of continuity of care is unprecedented as it relates to sickle cell and can make a huge difference in a patient’s quality of life. SCCRIP is their new ground-breaking sickle cell intervention program.

SCCRIP Offers Hope For Adults with Sickle Cell

About SCCRIP

“A new study at St. Jude Children’s Research Hospital, the Sickle Cell Clinical Research and Intervention Program, helps scientists understand how sickle cell disease progresses. The study, called SCCRIP, allows participants to learn more about their health and helps researchers at St. Jude and area adult-care hospitals gain long-term insights into the disease. Children in this study will return to St. Jude for periodic checkups throughout their lives. Additionally, researchers will sequence the genes of up to 1,000 patients to understand how genetic changes affect disease severity.

What Stands Out to Me About SCCRIP

  • According to the video SCCRIP is at the foundation for what is to come in sickle cell care
  • SCCRIP follows patients from birth to end of life
  • SCCRIP allows doctors and researchers to sequence a SCD patient’s genetic code and see how its correlates with their symptoms, which could lead to a cure and better personalized treatment

Reference:

St. Jude Children’s Research Hospital. “The St. Jude Sickle Cell Clinical Research and Intervention Program.” Online Video clip. YouTube. Published on Sep 1, 2016. Retrieved September 15, 2016 from https://youtu.be/2t0eCvpN87U

Did you enjoy this post? Be sure to check all of my post promoting Sickle Cell Awareness.

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Reader question: What is your hope for adults with sickle cell disease?

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  • Tia

    It’s great to know that SCCRIP will be conducting more long term research. I hope its findings help those suffering with sickle cell to live better lives.

  • Absolutely amazing post here. I have had friends and extended family who have suffered with this and some have passed away so my hope would be that they can live long, happy and fulfilled lives.

  • Great post. A friend of mine’s father passed away after suffering from sickle cell when we were kids. Glad that SCCRIP is doing this research.

  • I hope that they are able to figure out why things get worse as kids become adults.

  • Tiffany Heard

    St. Jude seems like an awesome hospital who cares about its patients. Glad they are conducting research. I agree it so much easier to stay with a doctor that has been working with you as a child

  • I had a boyfriend with sickle cell…and he was 19 years old. I can see how it hard to transition as an adult with your sickle cell disease because you have to grow out of your pediatrician. Actually my boyfriend had to stay in a children hospital up until 21 because of the lack of adult sickle cell care…it was easier to stay with a pediatric hospital to heal him until then. I will be honest they need to continue to fund, bring just as much awareness as their counterpart disease that affects more Caucasian people which is cystic fibrosis. Its just one gets more funding over the other. I pray children with sickle cell can get the awareness, funding and medical continued advancement so more recipients can live longer! Thanks for sharing the knowledge.

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