Projects

1. Prevention

a) Primary Prevention

Although there is no way to prevent sickle cell disease, genetic counseling can help advise parents who are heterozygous and therefore at risk of producing homozygous offspring.
A study suggested that offering prenatal screening for Sickle Cell Disease (SCD) at the time of pregnancy confirmation in primary care increased the proportion of women screened before 10 weeks’ gestation.

b) Secondary Prevention

Adult health maintenance for SCD patients:
Patient screening must be done with an understanding of concerns specific to SCD patients. For example, systolic and diastolic blood pressures in patients are generally lower than matched controls, so values within the normal range that are rising even modestly may indicate renal disease or other comorbid medical conditions. Patients who are being transfused should also be tested for hepatitis C.

Contraception
Recommended to prevent unwanted pregnancies.
The World Health Organization (WHO) recommendations for the use of alternative methods of contraception stem from concerns that combined hormonal contraceptives may increase the risk of thromboembolic disease and therefore are not recommended.
Progesterone-only contraceptives have no restrictions as they are not associated with an increased risk of thrombosis.
Copper and levonorgestrel intrauterine devices (IUDs) have no restriction for use in SCD.

Immunization
I.
The conjugated pneumococcal vaccine is recommended for children under the age of 2 years.
II. 23-valent pneumococcal vaccine is recommended after the age of 2 years.
III. Haemophilus influenzae type b.
IV. Meningococcal and hepatitis B vaccines, and standard vaccinations as recommended by the CDC if not previously administered.
V. Annual influenza vaccination is indicated, along with revaccination for pneumococcus every 5 years for adults.

Screening of children
I.
Transcranial Doppler (TCD) screening of children with HbSS is recommended, starting at 2 years of age and continued annually if TCD is normal and every 4 months if TCD is marginal. Children with abnormal results are tested again within 2 to 4 weeks.  Screening for retinopathy with a dilated eye exam beginning at age 10 years.
II. Antibiotic prophylaxis of pneumococcal infection is given from the time of diagnosis until 5 years of age. A systematic review of randomized controlled trials of the effects of prophylactic antibiotic regimens for preventing pneumococcal infection in children with SCD found that prophylactic penicillin significantly reduced the risk of pneumococcal infection. Use of penicillin was associated with minimal adverse reactions.  Caution is advised in renal impairment with high doses or parenteral administration, as rashes are more common and a dose reduction may be necessary.

2. Protection

We sensitize Sickle Cell Community against the myths and misconceptions around Sickle Cell Disease.

– Graph of survival curves (“survival function estimates”) of children without any sickle cell genes (HbAA),
– Children with sickle cell trait (HbAS)
– Children with sickle cell disease (HbSS)

Those who had the sickle cell trait (HbAS) had a slight survival advantage over those without any sickle cell genes (HbAA), with children with sickle cell disease (HbSS) faring the worst.

3. Policy

– Push for Free medication to be given to the Sickle Cell Warriors
– Push for a special NHIF cover for Sickle warriors
– Customized Insurance package for sickle cell with Insurance Companies
– Compulsory screening on new born children
– Have a Mother umbrella for Sickle Cell in Kenya

Activities
– Provision of modern rapid testing kits for remote health centres and care providers.
– Create awareness to the general public schools and universities.
– Provide information to churches and mosques on premarital counselling of couples intending to marry.
– Provide medicine e.g. Hydroxyurea and other drugs known to improve the lives of sickle cell patient through clinics in all affected regions in kenya
– Provide counselling to patients already living with sickle cell disease.

Program Strategy

Events
Advocacy
Support

Medical

Socioeconomic

Talent Based
Career Paths
Technical Trainings
Mentorship