This is a judge free, drama free support group for Sickle Cell Anemia. We are here to give support and a helping hand when you want to vent about the hardships of Sickle Cell Disease or when you just need a laugh from people who understands you the most.CJ Sanders started this group after finding that there are groups out there that were more judging than understanding. He set to make a difference and ensure that there’s a group that’s all about LOVE. If you ever feel alone let someone know here, please. In this group, we ALL come together, even if it’s just needing someone to talk to. We are all going through the same thing here.  Sometimes friends, spouses, family, doctors, bosses, etc just don’t understand. We will. We know exactly what we are going through.   Social media

After a recent stint in the hospital, I began researching documentaries and photo series about sickle cell. Disappointed by what I found - sad stories, stories that narrow in on the pain and, stories that tell how there is no cure; I decided it was time for a different narrative. One of strength, hope and joy.  People living with sickle cell often call one another warriors. So I contacted my closest warrior friends and began discussing what it means to be a Sickle Cell Warrior. Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} Being born with Sickle Cell Anemia has its ups and downs. This disease has humbled me, and through that humility I've developed a better spiritual relationship with GOD. My image represents a fighter who wins.  Related story

Introduction: The objective of this study was to determine if patients with sickle cell disease using cannabis had decreased frequency of acute vaso-occlusive crises (VOCs) that required hospitalization. Method: This was a retrospective study in which 270 urine drug screen tests were done on 72 patients: 40 males and 32 females. Results: Cannabinoids were found in 144 urine tests from 37 patients and were negative in 126 tests from 35 patients. Males who used cannabis were significantly younger (p<0.001) than males who did not. Patients who tested positive used benzodiazepines, cocaine, and phencyclidine significantly more often than patients who tested negative. There was no significant difference in the amounts of opioids consumed by users and nonusers of cannabis. The cannabis cohort was seen in the clinic significantly (p<0.05) less often than controls, but hospital admissions were significantly greater in the cannabis group than controls (p<0.05). Conclusion: These data show an unexpected negative effect of cannabis on the frequency of VOCs. This may be due to the effect of cannabis on the brain and/or the severity of the disease in the cannabis users. More controlled studies are needed to clarify these findings. Abstract source

Sickle cell anemia is a manifestation of a single point mutation in hemoglobin, but inflammation and pain are the insignia of this disease which can start in infancy and continue throughout life. Earlier studies showed that mast cell activation contributes to neurogenic inflammation and pain in sickle mice. Morphine is the common analgesic treatment but also remains a major challenge due to its side effects and ability to activate mast cells. We, therefore, examined cannabinoid receptor-specific mechanisms to mitigate mast cell activation, neurogenic inflammation and hyperalgesia, using HbSS-BERK sickle and cannabinoid receptor-2-deleted sickle mice. We show that cannabinoids mitigate mast cell activation, inflammation and neurogenic inflammation in sickle mice via both cannabinoid receptors 1 and 2. Thus, cannabinoids influence systemic and neural mechanisms, ameliorating the disease pathobiology and hyperalgesia in sickle mice. This study provides ‘proof of principle’ for the potential of cannabinoid/cannabinoid receptor-based therapeutics to treat several manifestations of sickle cell anemia. Abstract source

Regular exercise both before and after your stem cell transplant will prevent you from losing your strength and overall activity levels. However, exercising too hard or improperly may be harmful. This booklet provides guidelines to help you exercise effectively in order to promote a sense of well-being and cope with cancer-related fatigue. Before starting any new exercise routine, it is important to check with your doctor. A physical therapist and an occupational therapist will work with you to design an exercise program for both during and after your hospital stay. We encourage you to make exercise a regular part of your life and become an active participant in your treatment and recovery. It is important to consider exercising guidelines for safety and better results.   Abstract source

Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} Treatment for depression and anxiety - Anti-depressants - Counseling Individual Group therapy - Talk about challenges on managing a chronic illness Social isolation Unpredictable painful crisis Chronic pain Cognitive dysfunction Complications More fatigue than peers Potential death Be more active in managing your sickle cell disease - Health care decision making - Learn to recognize stressors - Take control through daily decision-making   Abstract source

Your Health Is Important • You are the primary health care provider for you • You make decisions every day to manage your health • You notice problems or concerns before your doctor does • You can make a difference in your health To Take Care of Myself I Must • Monitor my health • Keep all of my medical appointments • Stay up to date on my vaccines • Take my medicine as ordered • Know when to call the doctor • Eat right and exercise • Monitor my environment • Have a home care plan to manage my sickle cell   Abstract source

Many have spoken out about the need for change in the quality of care for individuals with sickle cell disease (SCD). Despite all of the earlier and ongoing research activity, SCD continues to be a major, global public health crisis, and cause of early death and signifi cant disability. SCD is associated with multiple potentially life- and limb threatening complications, but vaso-occlusive crisis (VOC), resulting in acute, excruciating pain, is the most common clinical manifestation of SCD and reason for emergency department (ED) visits. A VOC is defined as pain resulting from tissue ischemia caused by vaso-occlusion, most commonly in the bone(s) and bone marrow. Although national guidelines have been in place since 1999, acute care remains suboptimal. Therefore, there is a critical need to improve care for SCD patients in the United States. This level of optimal care requires a comprehensive care network, including primary care providers and hematologists providing specialized SCD care. A myriad of issues prevent most individuals with SCD, particularly adults, from receiving the level of optimal care that they need.   Abstract source

The Sickle Cell Disease Council For CHANGE (CFC) is a working group of passionate experts and advocates who are dedicated to elevating the quality of patient care for SCD VOC. The CFC aims to optimize acute care for VOC management, educate individuals with SCD and healthcare providers on the science of VOC, and empower advocates to raise awareness of patients’ needs. Ideally, acute VOC management should begin with a thorough and rapid assessment of a patient’s pain on presentation. In particular, confirming that a patient is presenting with VOC, and not with a more life-threatening or limb-threatening situation, is critical. Patients with SCD presenting with VOC should be triaged at ESI level 2, similar to patients presenting with chest pain that may be related to acute myocardial infarction or neurological signs that may be related to stroke. Additionally, identifying other potential causes of a patient’s pain from their past medical history and other risk factors, along with the patient’s recent use of analgesics are necessary steps in the evaluation.   Abstract source

What Teachers Should Know: Sickle cell disease is an inherited disorder of the red blood cells. It affects about 100,000 people in the United States. In sickle cell disease, the red blood cells become distorted and look C-shaped, like a sickle. Sickle cells die early, which leads to anemia. Also, these sickle-shaped blood cells tend to get stuck in narrow blood vessels and clog blood flow. This can cause severe pain and organ damage.    What Teachers Can Do: Students with sickle cell disease may miss class time or be absent for doctor visits or hospital stays. Teachers need to provide these students with special consideration regarding missed instruction, assignments, and testing. Teachers should encourage students with sickle cell disease to participate in moderate physical exercise and other school activities. Chronic fatigue or pain can make some students appear that they are not motivated to learn. Knowing the student well can help you make a proper assessment. Abstract source