Posted in Awareness

World Sickle Cell Awareness Day June 19, 2021

This World Sickle Cell Day (observed every year on June 19), find new stories and resources about sickle cell disease!

So many people I have met that have sickle cell disease also have Osteonecrosis aka Avascular Necrosis.

Sickle Cell is an inherited blood disorder that causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body. People with SCD can experience pain, anemia, infection as well as many other health issues like Osteonecrosis, Vision Loss , Anemia,DVT and Extreme pain.

According to some of my Osteonecrosis group members : Living with sickle cell disease can be a challenge. But there are steps you can take to live the healthiest best life possible.

Here are some tips from the CDC web page

It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at any hour, if there’s a problem. Be sure to find a place that will have access to your medical records or bring a copy.

Go to an emergency room or urgent care facility right away for:
  • Fever above 101° F
  • Difficulty breathing
  • Chest pain
  • Abdominal (belly) swelling
  • Severe headache
  • Sudden weakness or loss of feeling and movement
  • Seizure
  • Painful erection of the penis that lasts more than 4 hours
Call a doctor right away for:
  • Pain anywhere in the body that will not go away with treatment at home
  • Any sudden problem with vision

People with sickle cell disease can live full lives and enjoy most of the activities that other people do. The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible.

Find Good Medical Care

Sickle cell disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems. Often the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.

Get Regular Checkups

Regular health checkups with a primary care doctor can help prevent some serious problems.

  • Babies from birth to 1 year of age should see a doctor every 2 to 3 months.
  • Children from 1 to 2 years of age should see a doctor at least every 3 months.
  • Children and adults from 2 years of age or older should see a doctor at least once every year.

Osteonecrosis is common in patients with sickle cell disease, with an incidence ranging from about 2 to 4.5 cases per 100 patient-years. Patients with the hemoglobin SS genotype and α-thalassemia and those with frequent painful crises are at highest risk. The overall prevalence is about 20-30 percent.

Osteonecrosis, a form of ischemic bone injury that leads to degenerative joint disease, affects ∼30% of people with sickle cell disease. Although osteonecrosis most commonly affects the femoral head (often bilaterally, with asymmetric clinical and radiographic progression), many people with sickle cell disease also present with multifocal joint involvement. Meaning it can be in the femoral head or hip as well as knees, shoulder, ankle etc…

Eat healthy with sickle cell more fruit and vegetables less processed junk and stay hydrated

References

CDC https://www.cdc.gov/ncbddd/sicklecell/index.html

Ash Publications https://ashpublications.org/hematology/article/2019/1/351/422583/Osteonecrosis-in-sickle-cell-disease-an-update-on

Eat right . Org https://www.eatright.org/health/allergies-and-intolerances/food-intolerances-and-sensitivities/nutrition-for-the-child-with-sickle-cell-anemia

Boston Medical Center https://www.bmc.org/sites/default/files/About_Us/Features/Sickle_Cell_Disease_Treatment_at_BMC/field_Attachments/SickleCellDisease-EatingHealthy.pdf

Author:

The body always knows what to do to heal itself. The challenge is listening and doing what your body needs. I was diagnosed with Osteoarthritis in 2012, Avascular Necrosis aka Osteonecrosis in my knee in 2014 and Factor V Leiden hetero, and Spondylolisthesis 2016 Health Advocate-Health Activist-World Changer Love photography, cooking, hiking, walking ,traveling and learning to live a new normal since my diagnosis. My Links Facebook Main Profile https://www.facebook.com/debbie.briglovichandio Main Blog www.ChronicallyGratefulDebla.com Twitter - https://twitter.com/debbiea001 Instagram - https://www.instagram.com/debbiea_1962 and https://www.instagram.com/chronicallygratefulme Support Group Avascular Necrosis/Osteonecrosis Support Int’l https://m.facebook.com/groups/DeadBoneDiseaseAvn Awareness for Avascular Necrosis & Other Conditions of The Bone and Joints https://www.facebook.com/AvascularNecrosisAndBoneDiseaseAwareness/ Avascular Necrosis Awareness Day November 29 – working with elected officials to get this recognized in all states https://www.facebook.com/AwarenessByDebla/ Avascular Necrosis-Osteonecrosis Knowledge and Education https://www.facebook.com/AvascularNecrosisEducation/ Facebook Link https://m.facebook.com/ChronicallyGrateful.Me/

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