Support Your Community on World Sickle Cell Day

Message from CEO Clarissa Pearson

Help us raise money for the Northern Virginia Sickle cell community. World Sickle Day, June 19th. There is power in numbers, so please be a part of ours. Working together helps break the Sickle Cell Cycle.

fundly.com/world-sickle-cell-day

Sickle Cell Patients have to deal with stereotypes such as;
Being viewed as : poverty stricken, drug addicts and under-educated.$ world sickle cell day
We are raising money because it is our goal to provide treatment protocols for all sickle cell patients. The goal of the treatment protocol for each Sickle Cell patients is to ensure that their treatment is the same , each time they visit the hospital. When Doctors provide Sickle Cell Patients with the treatment that works best for them, it not lessens the pain but the amount of time a patient has to stay in the hospital.
Our goal,is to,one day have enough clients and money So,that we are able, to provide support groups inside the hospital, a Sickle Cell Advocate, sickle cell literature on each unit and lastly better training for Doctors and Nurses and the best way to treat start an open dialogue between medical staff and patients on working together to treat their painful crisis.
Sickle Cell Patients spend their lives fighting to survive and then having to fight those whose main goal is to help us to feel better.
The day will come when we are tired of fighting, who will advocate for us then?

Psychological Therapies: Sickle Cell and Pain

Cochrane Database Syst Rev. 2015 May 8;5:CD001916. [Epub ahead of print]
Psychological therapies for sickle cell disease and pain.
Anie KA1, Green J.
Abstract
BACKGROUND:
Sickle cell disease comprises a group of genetic blood disorders. It occurs when the sickle haemoglobin gene is inherited from both parents. The effects of the condition are: varying degrees of anaemia which, if severe, can reduce mobility; a tendency for small blood capillaries to become blocked causing pain in muscle and bone commonly known as ‘crises’; damage to major organs such as the spleen, liver, kidneys, and lungs; and increased vulnerability to severe infections. There are both medical and non-medical complications, and treatment is usually symptomatic and palliative in nature. Psychological interventions for individuals with sickle cell disease might complement current medical treatment, and studies of their efficacy have yielded encouraging results. This is an update of a previously published Cochrane Review.
OBJECTIVES:
To examine the evidence that psychological interventions improve the ability of people with sickle cell disease to cope with their condition.
SEARCH METHODS:
We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, which comprises references identified from comprehensive electronic database searches and the Internet, handsearches of relevant journals and abstract books of conference proceedings.Date of the most recent search of the Group’s Haemoglobinopathies Trials Register: 17 February 2015.
SELECTION CRITERIA:
All randomised or quasi-randomised controlled trials comparing psychological interventions with no (psychological) intervention in people with sickle cell disease.
DATA COLLECTION AND ANALYSIS:
Both authors independently extracted data and assessed the risk of bias of the included studies.
MAIN RESULTS:
Twelve studies were identified in the searches and seven of these were eligible for inclusion in the review. Five studies, involving 260 participants, provided data for analysis. One study showed that cognitive behaviour therapy significantly reduced the affective component of pain (feelings about pain), mean difference -0.99 (95% confidence interval -1.62 to -0.36), but not the sensory component (pain intensity), mean difference 0.00 (95% confidence interval -9.39 to 9.39). One study of family psycho-education was not associated with a reduction in depression. Another study evaluating cognitive behavioural therapy had inconclusive results for the assessment of coping strategies, and showed no difference between groups assessed on health service utilisation. In addition, family home-based cognitive behavioural therapy did not show any difference compared to disease education. One study of patient education on health beliefs showed a significant improvement in attitudes towards health workers, mean difference -4.39 (95% CI -6.45 to -2.33) and medication, mean difference -1.74 (95% CI -2.98 to -0.50). Nonetheless, these results may not apply across all ages, severity of sickle cell disease, types of pain (acute or chronic), or setting.
AUTHORS’ CONCLUSIONS:
Evidence for the efficacy of psychological therapies in sickle cell disease is currently limited. This systematic review has clearly identified the need for well-designed, adequately-powered, multicentre randomised controlled trials assessing the effectiveness of specific interventions in sickle cell disease.
PMID: 25966336 [PubMed – as supplied by publisher]