For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor. "It was really hard to bathe in here, and I found myself not wanting to touch the walls," she explains. The bathroom is where Brocks-Capla's son Kareem Jones died in 2013 at age 36 from sickle cell disease. It's not just the loss of her son that upsets Brocks-Capla. She believes that if Jones had gotten the proper medical care, he might still be alive today. Patients and experts alike say it's no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did more than 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. A 2013 study found that life expectancy had dipped to 38 for men and 42 for women in 2005. Related story

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If sickle cell anemia has left you unable to work, you may be eligible to receive Social Security Disability benefits. Social Security Disability Insurance (SSDI) pays benefits to the patient diagnosed with sickle cell anemia and certain dependents in his or her family if he or she has worked enough to earn enough credits to pay in the required amount of taxes to Social Security. In order to receive SSDI, the claimant’s condition must be severe enough to render him or her completely disabled. Sickle cell anemia is most commonly diagnosed blood disorder in the United States, according to bethematch.org. One out of every 500 African Americans and one out of every 1,000 to 1,400 Hispanic Americans are diagnosed with the disorder, according to the site that seeks donor matches to help treat the disease. Only those considered permanently disabled, which means unable to work for a year or longer, are eligible for Social Security Disability benefits. During the process of applying for benefits, the Social Security Administration collects an extensive amount of information about the claimant and his or her condition. Medical records must be received so the disability determination staff can determine if the individual does meet the requirements to be declared disabled. Abstract source

Persons with sickle cell disease can have both chronic (daily) pain and sudden (VOC) pain. IHTC’s approach to pain management involves multiple experts and techniques. Our team includes physicians, psychologist, nurse practitioners, physician assistants, nurses, social workers and physical therapist. We meet regularly to discuss patient cases, standards in pain management, alternative treatments and new findings related to pain management. The IHTC helps patients and families develop personalized pain management plans. Partnering with you and your family allows for a proactive approach to pain control for your situation. Our program provides tools to enable treatment of pain early, potentially avoiding a hospitalization.   Abstract source

Patients with sickle cell disease frequently seek care in the emergency department. They have reported experiencing negative attitudes from emergency providers. This study was undertaken to evaluate change in emergency provider attitudes toward patients with sickle cell disease over a 2.5-year time period when several educational efforts were ongoing. The General Perceptions about Sickle Cell Disease Patients Scale was used to measure emergency provider attitudes at 2 emergency departments at baseline, 6 months, and 30 months into the project. Analyses of covariance were used to test for effects of site, time, and provider type, as well as their interactions, on Negative attitudes, Uneasiness With Care, and Positive Attitudes subscale scores, after controlling for years of provider experience. The number of surveys returned at the 3 time points was 216, 182, and 113, respectively. The mean Negative Attitudes subscale scores decreased significantly over time, with significantly higher mean Negative Attitudes subscale scores reported by nurses than by physicians. The mean Uneasiness With Care subscale scores did not differ significantly over time, but the mean score was significantly higher for physicians than for nurses. The mean Positive Attitudes subscale scores significantly improved over time, with physicians tending to have a higher mean Positive Attitudes subscale scores than nurses. During the observation period, there was improvement in attitudes, with a decline in mean Negative Attitudes subscale scores and increase in mean Positive Attitudes subscale scores. Physicians reported better attitudes than nurses. Abstract source Full text

What is genetic testing? Genetic testing uses laboratory methods to look at your genes, which are the DNA instructions you inherit from your mother and your father. Genetic tests may be used to identify increased risks of health problems, to choose treatments, or to assess responses to treatments. What can I learn from testing? There are many different types of genetic tests. Genetic tests can help to: - Diagnose disease - Identify gene changes that are responsible for an already diagnosed disease - Determine the severity of a disease - Guide doctors in deciding on the best medicine or treatment to use for certain individuals - Identify gene changes that may increase the risk to develop a disease - Identify gene changes that could be passed on to children - Screen newborn babies for certain treatable conditions Genetic test results can be hard to understand, however specialists like geneticists and genetic counselors can help explain what results might mean to you and your family. Because genetic testing tells you information about your DNA, which is shared with other family members, sometimes a genetic test result may have implications for blood relatives of the person who had testing. Abstract source

INTRODUCTION: Sickle cell disease (SCD) is a complex illness with many social-behavioral co-morbidities. The aim of this project was to describe unmet social-behavioral health needs for adults with SCD who presented to the emergency department for treatment of vaso-occlusive episodes (VOEs). METHODS: A descriptive study using 1:1 interviews during an ED visit for a VOE was conducted; a brief social behavioral health screening interview guide was used. A convenience sample of adults with SCD treated in the emergency department for a VOE were eligible for inclusion. RESULTS: We conducted 147 interviews over 14 months. Patients reported transportation and/or scheduling difficulties with clinic appointments in one third of the interviews. Four major themes emerged: clinic appointment barriers, medication barriers, other care barriers, and social-behavioral issues. A majority of patients (53%) reported being brought to the emergency department by a family member at their current visit. Patients cited having insurance coverage issues in more than one quarter (27%) of the interviews. Difficulties in obtaining prescriptions were cited as a result of a financial copay (17%), transportation (11%), and pharmacy (9%) issues. Almost one third of patients (29%) reported feeling depressed, and 20% reported feeling anxious. DISCUSSION: Many patients with SCD who are treated in the emergency department have social or behavioral health risk factors. Emergency departments have an opportunity to screen and refer patients for follow-up. Future research should investigate referral outcomes and their effect on ED and hospital use. Abstract source

Marie Ojiambo first came into the limelight when she was crowned Miss Kenya USA 2013 and the People’s Princess Miss Africa USA 2013. She entered the pageant because she saw this as an opportunity to bridge the gap in knowledge and understanding of sickle cell disease. She has gone ahead to do exactly that. Q: Tell us more about your background, Marie. A: I am 27 years old and the second born in a family of four children. I am the daughter of a single mother. I was born and raised in Nairobi- went to Loreto Convent Valley road, from where I moved onto pursue ‘A’ levels at the Millenium academy and later on got my Bachelors degree at the University of Nairobi’s School of Pharmacy. Related story